Information from Thomas's Thursday scans is going to be posted separately after we meet with the oncologist and surgeon on Friday. [EDIT: Thomas's Surgical Plans for Nov. 18 published here.]
1. Weekend
Last weekend consisted of Thomas's first hospital admission for fever and his discharge two days later.
2. Cancer Education
In the six months since our son’s diagnosis, I have academically studied and learned more about cancer and its treatment than perhaps any other topic since university. What I've learned is that the common understanding of cancer (cells that multiply uncontrollably) and its treatment (chemotherapy is poison) is simplistic to the point of misunderstanding. I have reached that point of study when one breaks through and shatters all of the preconceived notions only to discover the vast scholarship, the surface of which I have only scratched. It makes me feel great respect for oncologists and cancer researchers.
I have come to appreciate the different qualities of studies, why for instance a double-blind, placebo-controlled study is the gold standard, and why so few treatments stand up to this examination.
Surgery was the first treatment developed for cancer. Even today, depending on the staging and many complex biological factors, some cancers can be entirely removed by surgery alone. This is a wonderful outcome for people with those favorable circumstances. There are people who have been cured, or maybe it is more accurate to say freed, from their cancer by a highly trained surgeon. Some, during their remission, have gone on to market and sell alternative therapies as a cure for cancer, while downplaying or omitting their life-saving surgery. Based on what I have learned, I remain skeptical.
Chemotherapy is one of the now most basic treatments for cancer and yet I believe it is unfairly maligned by some as "just poison." These drugs are specifically targeted to tumor cells, in most cases to tiny components and processes inside of each tumor cell. It's incredibly interesting stuff. Oncologists don't like giving a medication with strong short- and long-term side effects, but they are out to save lives.
I understand that there is a natural distrust of “Big Pharma.” Many feel that these companies should just search the Amazon rain forest for God's natural cure for cancer. I will share that "Between 1954 and 1964, [the Cancer Chemotherapy National Service Center] would test 82,700 synthetic chemicals, 115,000 fermentation products, and 17,200 plant derivatives and treat nearly 1 million mice every year with various chemicals to find an ideal [chemotherapy] drug." (The Emperor of All Maladies, p. 122). And that was way back in the '50s, the nascent beginnings of chemotherapy! Brilliant chemists have searched the world over for anything God made for us that has therapeutic properties to treat cancer.
Our son Thomas has taken these chemotherapies (all derived from God’s creation):
- Cisplatin and Carboplatin are heavy metal compounds.
- Etoposide is a plant alkaloid made from the mayapple plant.
- Doxorubicin is an antitumor antibiotic derived from the soil fungus Streptomyces.
- Topotecan is a derivative of camptothecin (a plant alkaloid obtained from the Camptotheca acuminata tree).
- Cyclophosphamide is an alkylating agent derived from nitrogen mustard (vesicant war gas). (The story of how a war gas was found to have a useful, life-saving purpose is something to celebrate.)
The future of cancer treatment seems to be at the genetic level. Already, tumors are now being tested genetically and drug treatments that target the exact genetic anomalies are used. Thomas is actually being genetically tested this week. In the near future, cancer treatment may become "agnostic," in that the treating physician will not be concerned with the location of the cancer (e.g., breast, stomach, lung) but with the genetic mutations that caused the cancer in the first place.
Below are some of the resources I am appreciating and learning from:
The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee, M.D.--Available as a 600-page book or as a PBS special (which I have not yet watched): For the first four weeks when Thomas underwent testing and we awaited staging results, I could not read anything. As soon as his cancer was staged, I devoured this incredible book and am now reading it a second time.
Neuroblastoma Family Support Group on Facebook--I choose to wait four months after diagnosis before joining this online group because the price for learning helpful information from fellow parents is having one's heart broken by other's neuroblastoma journeys. One's heart can't take much more than the weight of one's own child's journey.
Neuroblastoma Global Parent Symposium 2020--This free, online conference provided 20 hours of content presented by the international experts in the field of neuroblastoma (including one session by Thomas's oncologist) to more than 600 parents across more than 40 countries. This aired while I was in the hospital with Thomas so I've been working my way through the recorded sessions. Thomas's smiling photograph is one used in the closing ceremony montage, not that I could see it very well through my tears.
Children's Neuroblastoma Cancer Foundation Parent Handbook--I am working my way through this incredibly detailed handbook, all available free online.
Medical studies--I have seen flagrant misrepresentation of science such that I advise that medical articles written for lay people should be considered not "the truth," but a mere jumping-off place to go read the medical studies to see if they support what was presented to the public. Web resources such as Medscape or MedlinePlus are academic.
Debunking Misinformation
There is also information available debunking misinformation about cancer treatments. This is important because there is a real risk that someone who was promised a miracle cure could decline conventional cancer treatments which could result in additional suffering or death. When one sees something like the Hope4Cancer alternative treatment centers in Mexico advertising double, triple, and quadruple survival rates of Stage 4 cancers compared to world class, traditional hospitals all over the globe, that should make the reader suspicious of predatory practices.
Science-Based Medicine is a website maintained by a team of medical doctors which debunks medical myths and seems to offer plentiful medical citations to back their arguments. Its section on Complementary and Alternative Medicine is particularly helpful for understanding why cancer will not be treated or cured by a long list of miracle cures. When a cancer cure sounds too good to be true, I would advise searching the Internet for lawsuits against the practitioner who is making money off of it, or lawsuits about the product itself, or search for the product name with the terms "hoax" or "quackery" because useful information turns up. I recommend researching in this way the good and the bad about all treatment options (traditional or alternative).
This resource also helps explain why one exact specific cancer or some cells in a petri dish might be aided somewhat by a treatment, but that does not apply to the myriad other types of cancer or cancer in a human being. Cancers are wildly different from each other.
Johns Hopkins also has an area on its website devoting to debunking cancer cure myths.
For my own sake and that of interested readers, I'll come back and add to this list as I found creditable resources.
3. Progress Reports
This year has been one different kind of homeschooling year so far! We got Thomas's cancer diagnosis in time for me to redesign our curriculum to be less intense and more independent. Still, I have cried regularly about how I can keep teaching, how I can keep up, and what we will do if cancer treatments persist even beyond this year. How will I get my firstborn through high-school? How can I ever join a co-op or hybrid school again knowing the relapse rates of Thomas's cancer? Then my paralysis sets in.
This week completes 12 weeks--a perfect quarter!--before two weeks off--surgery scheduled!--so I decided to do a progress report on my own children and was so proud--warts, bumps, fights, and all--with how they are completing their tasks and much more independently than in any years past.
Thomas, Kindergarten
Thomas only gets to do school when we're not at chemo or other hospital appointments and when he is feeling well, so that is about one to one and a half weeks out of every three. I feel badly about his schooling until I think that he has cumulatively done only about 4 weeks of schooling (out of 12).
In READING (All About Reading) and MATH (PACE K-level math booklets), he is right on track as if he'd done four weeks of school! He can now blend words.
He loves doing PENMANSHIP and daily ARTS AND CRAFTS. I have not been reading daily from The Golden Children's Bible or Chats with God's Little Ones, so I need to figure out how to teach him religion more formally.
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| Thomas drawing a penguin |
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| Penguin by Thomas (5) |
Joseph, 2nd Grade
Joseph is ahead of schedule with MATH and perfectly on track with HISTORY (RC History: many living books that I read aloud to him), PHONICS (AAR), SPELLING (AAS), GRAMMAR (Seton). While less formal, he is doing enough PENMANSHIP, ART, and TYPING. For LITERATURE, I finished reading aloud the entire Narnia series (summer into fall) and am now reading Swiss Family Robinson, even if at a snail's pace. Joseph began reading independently this fall and just completed My Grandfather's Dragon. For SCIENCE, I finished reading aloud to him The Good and Beautiful Nature Reader Level 5, which he loved. I have not managed for him any of the twice monthly No Sweat Nature Study courses online, nor even had him watch our science DVDs, as hoped, so there is room for improvement there. He is on track with CATECHISM (Faith and Life), but I need to improve my reading aloud to him The Golden Children's Bible and somehow get him reading little saint books at his reading level.
Margaret, 4th grade
For her age, she is really rising to the occasion with completing all her school work even during my great absences. She is perfectly on track with MATH (Teaching Textbooks 5), HISTORY (RC History: many living books), SPELLING (AAS), and Seton's GRAMMAR, READING COMPREHENSION, and THINKING SKILLS. In SCIENCE, she finished Apologia Astronomy, and is on track with Apologia Zoology 3. Also she is taking Clemson lab science classes every other week online. For LITERATURE, she finished reading and answered essay questions about Mark Twain's The Prince and the Pauper, and is now reading Jules Verne's Around the World in 80 Days. Also, she reads one or two "fun books" weekly. She is on track with CATECHISM (Faith & Life 4), is for personal holy reading is reading one chapter daily of My Daily Bread. She has completed reading three saint books and written a short report on each one (even learning how to type them up herself and email them to me while I'm in the hospital!). PENMANSHIP, ART, and TYPING are sufficient. For MUSIC, she continues with piano and violin, is in the youth orchestra for the first time this year. I have had to let the oldest three children become almost entirely independent with music this year, which means dropping back in competitiveness, lots of bumps in the road, but also some emotional maturing and their finding music they like and/or love.
Mary, 6th grade
She is perfectly on track with MATH (Teaching Textbooks 7), her Uncle Eric Government/Civics Middle-School Course, HISTORY (RC History), SPELLING (AAS), Seton's GRAMMAR, READING COMPREHENSION and THINKING SKILLS, and ART APPRECIATION (Seton Art 7). She is on track with CATECHISM (Faith and Life 6), BIBLE (Mother of Divine Grace Bible syllabus for 6th grade), and for personal HOLY READING she has knocked it out of the park, so far this fall alone reading Life of Christ by Bishop Fulton Sheen, Mary Was Her Life, The Catholic Girls Guide, plus four saint books. For SCIENCE, she finished Tiner Biology and is on track with Tiner History of Medicine, plus she is taking Clemson lab science classes every other week online. One never has to convince Mary to read LITERATURE, and so far this fall alone, she has completed reading and answering essay questions about Journey to the Center of the Earth, Uncle Tom's Cabin, Freckles, Deerslayer, Stalky and Co., and Girl of Limberlost; currently she is reading Oliver Twist. For MUSIC, she continues with piano and violin, is in the youth orchestra for the third time this year. She is also involved with Fidelis.
John, 8th grade
He is perfectly on track with MATH (Video Text Algebra), Uncle Eric Government/Civics High-School Course, SCIENCE (Tiner Biology and Tiner World of Mathematics), ART APPRECIATION (Seton's Art Through Faith). He is doing fantastic in his two online courses: LOGIC through Rolling Acres and LATIN through Memoria Press. He is on track with CATECHISM (Faith and Life 8), is beginning his Confirmation studies, and for personal HOLY READING has finished Mere Christianity and is now reading The Soldier of Christ by Mother Mary Loyola. For LITERATURE, he has finished reading and answering essay questions about Penrod and Screwtape Letters, and is now reading Tom Sawyer. I would like to find a solution for COMPOSITION (Seton 8), as I am unable to keep up teaching this according to the pace of the course, and it really does require a teacher. In MUSIC, John continues piano. He is also involved with altar server practice, Fraternus, and recreational ice hockey.
God will have to fill in the gaps:
I pulled my second grader from piano and, of course, did not launch Thomas in lessons. I pulled my fourth and sixth graders from Latin and my sixth grader from German. I very much wished my children could be doing some general P.E. or any kind of guided physical exercise at all, but that's not happening. I don't have my sixth grader in any formal composition (major fail for this English major mother). The children have always studied music theory because they have been in competitive music, but I don't have them enrolled in a class and don't know how to manage them learning independently through Snell books. I'm failing at ever doing any Morning Basket Time, so the kids are all missing out on learning:
- Baltimore Catechism Q&As, Character Calendar, Catholic Sprouts
- WordUp! vocabulary DVD
- The Harp and Laurel Wreath (poetry study)
- CCE Memory Facts (math facts, Latin prayers, etc.)
- CHC Art Cards (art appreciation)
But all in all I am thrilled at their growth in maturity as pertains to their education! It is alarming to watch the sausage being made, but the end product is wonderful!
4. Miscellaneous Moments
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| Amazing candy bags gift from Aunt S.! |
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| Zany stuffed animal gifts from Aunt S.! |
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| Baking with Mom: Making memories even with a box mix! |
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| Ferocious quilt gift from Baptist quilting ladies who are praying for Thomas! |
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| Lost of fall football and leaf piles |
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| Thomas zooming on his truck |
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| You know David is fast with his racing googles! |
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| "Mama, look what I built all by myself!" |
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| Big sister reading aloud to brother |
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| Thomas, the knight! |
Video of David (3) trying to convince Daddy to let him eat candy for breakfast
5. Wednesday: Clinic Day
We had appointments to have Thomas's port accessed by his favorite staff at the clinic, to begin the genetic testing of both Thomas and his tumor, and to have his nuclear medicine injected. Thomas has some 'mild distention' of his stomach, noted by the oncologist when he was in-patient at the hospital, watched by mom and dad all week ("why is his belly taut like a ripe watermelon?"), and then noted by the provider on Wednesday: she said that it is not an emergency, but if Thomas were not scheduled for a scan the subsequent day, she would have scheduled one for that very afternoon.
We had a gap in between appointments and had planned to walk at the creek, but it was pouring rain, so we watched a movie in the lobby instead.
Chris and I are not able to sleep much this week. We are both walking around in a fog on this little sleep, just sure that when we can finally lay our heads down on the pillows that we will fall asleep: but when we do, the minds start racing with fear and the insomnia begins.
6. Thursday: Mary's Birthday
7. Thursday: Scan Day
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| Parking lot flooded |
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| Water very close to the bridge |
- With 4.61" of rainfall in about 6 hours that makes this a 50-year return frequency rain event for Charlotte. Today ties for the 6th wettest calendar all-time in Charlotte (1878-2020).
- Almost 25,000,000,000 gallons of water fell on Mecklenburg county in about 6 hours today. That's over 22.3 million tons of water.
As hard as it is, don't worry about Latin, German, or the Baltimore Catechism. You have kids who are doing independent schooling, and they WILL catch up eventually. You have kids who can run the house in your absence, order groceries off of Instacart, and take care of a lot of household tasks that most college kids struggle at doing.
ReplyDeleteAs far as being part of a co-op or hybrid school, deal with that when you get to it. John can handle doing his high school work, especially since he is taking care of his own schooling well.