Friday, October 16, 2020

{SQT} Watching and Waiting

Cycle week 2, in which we were told that the doctor "would be shocked" if Thomas did not need a blood transfusion and in which he had a 75% chance of getting an infection to land him in the hospital was one of seemingly doing normal things on the surface while Mama and Daddy were watching our baby like hawks the whole week.

1. Weekend

Thomas weaned off his anti-emetics and felt much better over the weekend.

Always holding his emesis bag during chemo weeks

Before the lovely soaking rains, Margaret planted my spring bulbs for me.

Thomas created this cardboard box mask in order to dress up as Chewbacca.

Margaret did a painting kit.

We mostly stayed home from Mass, only sending Dad and Oldest Son. Thomas's risk of infection is extremely high this week, so we were not going to send younger children into a crowd (just more prone to pick up everything out there) and I needed one of the top two kids to stay home with me as an emergency standby babysitter.

On Sunday night, we once again hauled all the children out of their beds for a tornado warning and spent 45 minutes in the tiny powder room downstairs. We were safe!

2. Monday

Mama is back in the house and back to supervising school! Let's just say that transitions are never easy.

Mama and the older kids took a tour of Regina Caeli Academy, which has a center just 3.8 miles from our home. How could we not at least tour it to consider for next year? It is beautiful and has much to offer.

Playdough fun

A dear aunt sent the boys a fabulous National Geographic book about bugs and an explosion of bug finger puppets. It is proving so much fun!

A fall crown for Mary: "Thanks for protecting us from the tornado warning!"

Thomas is struggling increasingly with all his medication requirements, which we hope is a temporary reverberation of having to take medication every three hours around the clock for a week of chemo. But on Monday he was back to only twice daily yet he refused for an hour to take his (easy!) blood pressure medication. 

He curled up in a ball and said, "Mama, today is the day I stop doing brave things."

My heart broke.

Refusing his medication

Refusing his medication

3. Tuesday: Clinic Day

I packed for Thomas's clinic visit with more intention that we would probably be there all day, the oncologist having said he "would be shocked" if Thomas did not need a blood transfusion. Well, Thomas's numbers did not merit a transfusion, so we came home promptly and I taught my regular homeschool day! 

School, in-home music lessons, lots of playing outdoors in this gorgeous weather . . . 

Thomas's labs showed that his ANC was on its way down, presumably to zero, so Chris and I felt nervous when Thomas fell and skinned his knee outdoors. What would foreign bacteria going straight into his bloodstream do?! He received a bath and Neosporin.

Handsome caterpillar found in our yard

4. Wednesday

This was Day 10 of Thomas's cycle, when the oncologist said that many of his kids "like clockwork" develop an infection, something he said Thomas had a 75% chance of doing. I may have looked calm on the outside, but I was vigilantly watching Thomas.

We arranged rides for Mary to attend Mass and Fidelis and John to attend hockey, so we could have two adults at home. No infection for today!

Did our homeschool and music, watched our neighbors having a massive tree cut down, ate cookies delivered to us by said neighbors, played outdoors lots, and made pine cone bird feeders.

5. Thursday

The day began with Mama delaying school one hour for a Whole Family Clean-Up Event in my (I hope) righteous anger that people don't seem to put toys away in the garage, so it is a dangerous mess all the time, such that I regularly think I will trip and Thomas actually did trip and land on something, getting a bruise (his chemo makes him much more prune to bruising). Let's just say, now I could practically host a party in our garage, it is so neat and clear. (Not that I think it will last!)

We enjoyed a regular day of school and lots of playing outdoors in the beautiful weather.

At one point, I told Thomas I had to help another sibling with Grammar for a while and he said, "That's okay, I will do school all by myself. Where is my art book?"

In the afternoon, the girls participated in the second Clemson Science lab class for homeschoolers ages 8-12, this time studying the properties of water. It is really an excellent class in which they run through numerous experiments. Mary, in particular, is enthusiastic about the class and called me over repeatedly to see what they are doing.

At dinner, we had a scare with Thomas because he was complaining of headache and had a temperature of 100.0. The magic number to go to the hospital is 100.4. Over the next hour, his temp was in the 99s, and then it was normal all night, although he had unusual, tearful wakings and complained of headache again in the middle of the night (headache is a symptom I was told to watch for indicating he might need a transfusion). Friday morning would have us contacting the office as soon as it opened to inquire whether he needed to be seen.

When Thomas lays down to sleep, he sets up his St. Jude statue and his St. Jude electric candle (out of the picture below, but definitely burning right next to him).

6. Friday

Thomas woke up feeling fine and acting like his old self, so his oncologist's office said we did not need to bring him in to check labs again.

Normal school, tons of outdoor play, afternoon attic organizing by Mama, evening ice hockey for John . . . .


7. Bonus Reading

  • This article explains why the PCR test is exponentially too sensitive the way it is being used to declare "cases." If the PCR test were set at the appropriate number of cycles to identify contagious people, 85-90% of positive cases would not be considered so. The Fog of COVID-19 Data: How many cases aren’t even cases?
  • The two states just below us--South Carolina and Florida--are fully open and without mask mandates, so we pay attention to how they are doing. No Spike in Florida Coronavirus Cases Despite Lack of Enforceable Mask Mandate
  • Out of England: Flu and pneumonia STILL kills ten times more people than Covid
  • I'm no scientist and I don't know for sure what to think, but it is increasingly easy by the month to find reputable sources explaining why masks don't work. Masks Are Neither Effective Nor Safe: A Summary Of The Science
  • Meanwhile, 47 top worldwide scientists, which I don't think anyone could call crackpots, authored and signed the Great Barrington Declaration calling for an end to lockdowns as an utterly ineffective way to deal with a virus. As of today, 27,000+ medical practitioners, 10,000+ medical and public health scientists, and almost 500,000 citizens have signed. One has to keep asking, are the critics truly all wrong? Really?
  • More info helpful in considering California's new decree that all vehicles must be electric instead of conventional within a decade: (1) There is not enough cobalt, lithium carbonate, neodymium, and copper in the world to produce enough EV vehicles just for Britain alone to rid itself of conventional vehicles. (2) Even if the EV is driven for 90,000 miles and the battery is charged by cleaner natural-gas fueled power stations, it will cause just 24% less carbon-dioxide emission than a gasoline-powered car. As the skeptical environmentalist Bjorn Lomborg puts it, “This is a far cry from ‘zero emissions’". (3) EV are only affordable by high-income households.  The Dirty Secrets Of ‘Clean’ Electric Vehicles

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

Friday, October 9, 2020

{SQT} Chemotherapy Cycle #5: 38 Hours of Infusion

Such a wordy update . . . read what you want and leave the rest behind!

"Mama, take a picture of me and my pole!"

1. Long-Term Surgery Plans

This week Thomas completed Chemotherapy Cycle #5, this one with a new drug combination, a higher dose, and longer infusion times: five days instead of three, totaling 38 hours of infusion. We are so proud of our strong boy. 

We were able to meet with the oncologist on the first day to gain more understanding about this new regimen and the surgical plan. Thomas's neuroblastoma is Intermediate Risk and has "good biology," meaning that when they sent the biopsy to labs across the country for typing certain oncogenes, his tumor is not the most aggressive scary kind (that latter kind getting the child an automatic ticket to 18 months of planned high-risk cancer treatment). The oncologist said that 95% of the time, treatment of this type of tumor "goes swimmingly," but, as we have seen so far, Thomas's particular tumor has not been shrinking. His tumor may be resistant to chemotherapy. Time will tell.

The oncologist "feels strongly" that these Chemotherapy Cycles #5 and 6 will be followed more scans and then by surgery. The only circumstances under which that might not happen is if the tumor responded with a strong 30-40% shrinkage, in which case that shows response and the team might recommend trying to shrink it further before surgery. However, if it is not responding, then the team has to weigh continued damage from chemotherapy against risk of proceeding with surgery.

The surgical plan would be to remove as much of the tumor as safely possible.  If they can get it all (Gross Total Resection) safely, they will; however, what is anticipated is a Debulking Surgery in which the surgeon would remove what he can safely.  If this plan is followed, Thomas would go in for surgery the week following Chemo Cycle #6, putting surgery probably in the week before Thanksgiving or Thanksgiving week itself.

The very competent surgeon would hope to remove 80-90% of the tumor, leaving only what is unsafe to remove from the major abdominal arteries. Then the tumor would be sent to pathology just like the biopsy was months ago to determine whether the tumor has differentiated. There are three possibilities based on the fact that neuroblastoma is a unique cancer: the only cancer that can mature from malignant to benign cells. Neuroblastoma cancer is not caused by environmental exposures--not stress, not poor diet, not maternal choices during pregnancy, not chemical exposure--but is immature nerve cells that settled in the wrong spot while the baby was in his mother's womb and began proliferating out of control. However, because they are immature cells, sometimes they mature from malignant to benign.

1. Thomas's tumor could be full neuroblastoma (=malignant cells). If those cells were being left behind, Thomas would receive traditional, localized radiation. The doctor noted that patients with Intermediate-Risk Neuroblastoma (like Thomas) "very rarely receive radiation--only if it is a very stubborn tumor."

2. Thomas's tumor could be full ganglioneuroma (=benign cells). If so, he would not receive further treatment, the tumor would be left behind, and he would continue to be checked for cancer frequently (as will be the case regardless).

3. Thomas's tumor could be ganglioneuroblastoma (=mixed benign and malignant cells). If that is the case, a decision would need to be made whether he is further treated with chemotherapy or traditional, localized radiation.

2. Short-Term Treatment Anticipation

In the short term, this new combination and dosage of chemotherapy will launch our family into the more traditional expectation of what chemotherapy is like. When Thomas was initially diagnosed and we read through our Cancer Treatment Binder, we were alarmed and distressed at what he faced. However, he tolerated very well the first four cycles of chemotherapy because they were a "lower dose," per the oncologist: normally, we are told, a very low dose shrinks an Intermediate-Risk tumor.

We have come to Clinic weekly for four months to have Thomas's blood checked, always with the caveat that we might need to stay all day if Thomas needs a transfusion. He never has needed one, so we would return home an hour later and I would go about our homeschool day. Now the oncologist says that with this newer, heavier course of chemo, he feels that it is likely that Thomas will require at least one transfusion.

With this course, Thomas's Absolute Neutrophil Count (ANC) will fall to zero.  An ANC count below 500 is called neutropenia, which means no functioning immune system: obviously, a high risk of an infection.  A normal range of ANC is 1,500-8,500 and Thomas under the lower dose chemo had usually had an ANC around 2,000, which is "good by cancer standards."

According to our oncologist, 75% of the children on Thomas's current regimen will develop a fever, often right around Days 9-10 of the cycle, which is an automatic ticket to the hospital where the patient will probably stay four to five days. 

The oncologist reviewed the protocol with us: The minute I discover fever, I am to slather EMLA cream on Thomas's port to numb it for access. If Thomas develops a fever and looks good, I have time to make a phone call to the on-call oncologist before driving. If Thomas develops a fever and is shaking and vomiting, I will leap in the car and call on the way. The doctor's hope is that the patient would be on an IV receiving antibiotics within an hour of his temperature rising. Cancer parents have a "go bag" packed and ready for hospital stays.

All this means that within a 21-day cycle, we can anticipate Mama and Thomas will spend five full day times (not overnight) at the hospital receiving chemo, probably one day per week receiving a blood transfusion, and then most likely another five days per cycle in-patient receiving antibiotics. That's a lot of tumultuous parental absence from the home, so Chris and I are adjusting our expectations for October and November as a whole, homeschooling, Halloween, All Saints and All Souls, Chris' birthday and Mary's birthday celebrations, and Thanksgiving. We are talking through each and every time one parent will leave the house for such ordinary occurrences as our children's hockey team and ice skating lessons, Fraternus, Fidelis, orchestra, and Mass. The plan is to have the 11- or 13-year-old home at all times to babysit and cover the 30 minutes it might take for the absent parent to return while the at-home parent zipped off to the hospital with Thomas. 

These new anticipations about treatment are a lot to digest for us, but we are comforted by feeling confident in Thomas's medical team and in our faith that God loves Thomas even more than we do. Of course, I didn't much sleep a wink the night after learning all this!

3. A Week in the Life at the Infusion Center


Watching the construction site

On the first day, Thomas had a difficult time and was also wonky from the medications so he screamed for about 15 minutes, and then he collapsed in my arms and clung to me like a little monkey for a half an hour or so. I rocked him while crying big fat tears over all of this cross God has given us: I didn't say anything because Thomas didn't want me to talk.

After he dirtied his outfit too much to wear, the infusion center gave him a brand new outfit to keep: A BATMAN OUTFIT WITH CAPE!

He got to paint a fire truck and he generously gave it to his little brother David.


Watching the street below

Doing art is more fun when you do it together!

The Child Life music specialist gave Thomas his very own, brand new ukulele to keep! Thomas was feeling sick, so his excitement was muted in its expression, but he loves his new instrument.


After Chris took the other kids to the dentist, he surprised us by parking six floors below and waving to Thomas. Look at Thomas's smiling face in the reflection of the window!

Miss Leigh built a monster truck for Thomas, who then spent two silent hours painting it. He was so content and I did not even turn on a TV show for him till about 12:30!


Thomas had the best time squeezing Playdough through blunt syringes!

I feel gratitude for this typical view over Charlotte of so many trees outside our infusion room window. Thomas and I would spot the church steeple far in the distance.

While this view below the tree line may appear "ugly," it provided innumerable opportunities for observation and conversation for a five-year-old boy. Thomas and I would look out the window and he would comment on the birds eating the garbage, the overflow water coming out of the drainage system, a man carrying a ladder, a workman building something. Thomas even invented a game: he would take zoomed-in photographs out the window, then ask me to find the photographed detail by looking out the window--a game which wasn't that easy! It isn't life that is boring, it is people that are boring!

When it was time to play his ukelele, Thomas was quiet and unresponsive because of his anti-emetic drugs.

But he had perked back up in time for painting a wooden train!

These days are so tiring for both of us.


Daddy and siblings surprised Thomas by showing up with signs that said WE LOVE TOM! Mama had pre-arranged for Child Life gals Miss Hailey and Miss Leigh to be here to see Thomas's family also. Chris called us on the phone from below and told Thomas how proud he was of him for getting through five whole days of difficult medicine. It was a really special moment.

See the tiny people and signs below?

Miss Leigh and Miss Hailey!

Thomas got to make bats for Halloween.

We arrived home to this celebratory cake for Thomas, baked by a big sister.

Now I look forward to getting some sleep. All week, I had alarms set to give Thomas medication every three hours, but not one ever went off in the night because I was already just lying there awake with anxiety. I look forward to a slow morning! I look forward to serving my children a proper breakfast for the first time all week! I look forward to puttering about.

THANK YOU SO MUCH to the families who provided meals to us every single night so that we could get by. This was a gift to Thomas: for example, one night when we got home, he was feeling vulnerable and clingy and all he wanted to do was have me hold him in my lap on the couch in silence for a long time. I was able to give him that gift because someone brought us a meal which my husband could set out ready to go. Our whole community is in this fight together.

4. United Among our Differences

Our particular family lives in a social bubble, as I suspect a lot of people do, but now we find our bubble expanded into the Cancer World. Pediatric cancer--being almost universally caused by random mutations, not environmental effects--does not discriminate, so spending a lot of time in a cancer clinic is a bit like I envision the United Nations. The patients come from all races, creeds, levels of education, and socioeconomic classes. I see families that are whole and united; I see fractured families that are in poverty, in chaos, and need help. I see square, preppy folks (like us!), and I see dads who are covered in sleeves of tattoos and have giant holes in their ears. I see folks very competent in navigating this American world and I see foreigners who speak little to no English and need help from hospital translators. This week, I saw a family that had flown from Germany for their child to be treated at our oncology center.  I also read a promotional material about a current toddler patient at our clinic who has come from an Indian Reservation far, far away for his treatment. All of us parents are united here, trying to save our children's lives.

We parents so different in our backgrounds are all experiencing the pediatric infusion room: our own little battleground. It is loud here. Each child has an IV pole with a machine that BEEPS LOUDLY each time a particular medication or saline infusion is completed. For example, Thomas goes through about eight doses of various stuff each day here, so eight times his IV machine starts BEEPING LOUDLY. Multiply that times the dozen or so infusion bays here! There are children laughing, children playing music, children watching cartoons. There is the noise of children crying . . . like one little tyke I listened to scream his head off for 90 minutes straight. Or the toddler whose nascent language skills enabled her to vocalize her fears, "I don't want to see you!" to the nurse for at least ten minutes. There is so much crying and sounds of fear. There is also the sound of coughing, retching, and vomiting. Then sometimes a child experiences an emergency and there is the sound of ten nurses bustling around giving commands as they ensure the child's safety or arrange admission to the hospital (happened twice this week).

Through it all, these very different parents who would otherwise never talk to each other are here together, each one of us holding our precious babies, fighting the battle to save their lives.

5. So Grateful!

I felt fear anticipating this week wondering how I would maintain my home while being gone for five days. How do I keep homeschooling four grades of school? How would I keep the home neat and orderly?

I took deep breaths and reminded myself that many and probably most women in America work full-time and are gone from the house 40+ hours per week, yet they figure out how to juggle it. I set my alarm to get up at 5:45 each morning to pack our lunches and give Thomas his medications before a 7:15 departure. I left daily lists for the babysitters and daily school and chore lists for the kids. I did laundry each night to stay on routine.

We all came away from this week so grateful that we are in a temporary situation and that I have been home with my family for the last 13 years. The older children were calling and emailing me throughout each day. One child cried a lot and took up sleeping in our room to be near me when possible. The three-year-old told me, "I drew a picture of a park so that you will take me to the park." He cried each morning when I left.

Through the modern marvel of cell phones, I helped a child write her saint report at home, helped break up fights, comforted a crying child, gave or denied permission for this or that, and consulted plenty with my husband. It felt foreign to be managing aspects of the home across town and managing our home-away-from-home at the infusion center, but I found my rhythm.

6. Life Lessons

Our sweet children are learning life lessons right now. Usually I teach math, English, science, and music. Now Life is teaching them delayed gratification, patience, seeing beyond their own needs, and sacrifice. Our eighth grader is learning ownership of his own schoolwork and stayed on track. All week, our 11-year-old cooked breakfast for the family after I departed. When we ran low on grocery staples, she logged onto Instartcart and ordered what we needed. Our fourth grader completed her school work and music, calling me each day when she finished. Our second grader submitted in obedience to do his schoolwork for both his big sister and the babysitter teaching him. Each day I came home to the entire play area that is the little boys' room being perfectly cleaned because Joseph picked it up so well. Our three-year-old is learning to be content with another caregiver this week, even though he missed his mom a lot. (At bedtime he says, "Don't leave tomorrow, Mama. Don't leave!" God can bring good out of any terrible situation.

7. Miscellaneous Moments

Big sister practicing face painting on little sister

Cool pianos made by John (13) out of Legos

Beautiful Margaret (9) at Mass

Dapper Thomas (5) at Mass before Chemo Week--sitting outside alone with Daddy for germ avoidance

Thomas (5) is our Superman!

David (3) loves John (13) so much!

The girls are taking a science course for homeschoolers offered by Clemson University.

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