These family "Oktoberfest" festivities were planned before we received the sharply disappointing news about Thomas's cancer treatments on Friday. Having this event to occupy our minds and brighten our moments on Saturday turned out to be fortuitous timing (and delayed the sorrow settling deeper into our marrow till Sunday).
This event was God-arranged this year: I had begun seeing advertised the prior week tours of various pumpkin patches and farms, the likes of which I've always taken my children to see for 13 years. I realized that it would not be prudent this year with Thomas's compromised immune system. Even with some old fashioned cancer patient level of social distancing in place, I could not be sure how crowded or not it would be until I would get there. Also, Thomas is supposed to avoid digging in dirt or places where dirt is really going to be kicked up (fungi and bacteria) as well as all animals (bacteria), and both dirt and animals proliferate on farms.
I was feeling this twinge for several days, mourning another little thing lost to cancer, but had not mentioned it even to my husband when family friend CR called Chris with an idea: "I'd like to do something special for Thomas, so I was thinking of bringing my tractor and trailer full of hay to give him a hayride around the neighborhood."
From there sprung my idea to flesh out the hayride to an entire Family Fall Fun Day!
My life's accomplishment
Face Painting by Mary
Corn Hole
Thank you to the neighbor who lent this game to us!
Ring Toss
Guess the Candies in the Jars
Hay Ride through the Neighborhood
Thank you to dear friend CN who heard about our plans afoot and baked pumpkin cookies, which she sent to our home to eat while on the hay ride!
Not really driving
Not really driving
Not really driving
Chris put Thomas on his lap to drive around the cul-de-sac. Thomas (5) is so young that he really thought he was driving the tractor himself. As they slowly circled the cul-de-sac, he told his daddy, "I never knew I was so good at driving a tractor!" I wish I had video of him leaping off the tractor at the end and running up the grassy hill shouting triumphantly, "I drove it all by myself! I did it! I really did it!"
Roasting Hot Dogs
Thank you to the neighbor who lent us the firepit!
For dessert, we roasted s'mores also, but I don't have cute pictures of that mess! As the dusk crept in, the children ended their fun covering the driveway in sidewalk chalk.
I'm so grateful that we could have an enjoyable afternoon full of laughter and joy, free of appointments, needles, chemotherapy, and stress.
* * * * *
Nothing is without risk at all--but these are the measures Chris and I took to lower risk for this joyful day given to Thomas:
We timed this event in Thomas's chemotherapy cycle for when his blood lab numbers were strong. There are times during each cycle when his immune system would be so weakened that he could not see any friends.
The entire event was held outdoors.
I intentionally did not put out any finger foods or snacking foods so people would not be playing and interacting while putting food into their mouths.
When it came time to serve food, we all washed our hands simultaneously and then I brought out the food all at once.
Adults were the ones who handled serving of food, instead of kids grabbing at it willy nilly, and we washed our hands repeatedly throughout.
I tried to reduce germ transmission in making s'mores: an adult put the marshmallows on the sticks, then the child would bring over the stick with roasted marshmallow and an adult would assemble each s'more and hand it back to the child. The adults had washed their hands and this kept many hands from digging into the s'mores supplies on the table.
The Halloween candies I gave out as prizes for games were all the type wrapped in packages. I provided paper sacks with names written on them for the kids to save their candies to eat later.
I was ready for this to be an event just for our family. I waited until the day before to invite anyone and I was purposeful in inviting a smaller family. When one invites a family weeks in advance, and someone starts feeling maybe a little off, maybe a little sick, there is internal hopefulness and pressure to still come to the event. 'I'm not really sick, maybe those feelings are nothing, I just won't say anything.' By waiting till the day before, I was able to put out an invitation with the caveat "as long as nobody has any illness symptoms at all."
Only one family with three kids attended, as well as the couple providing the tractor. The crowd looks big, but it is only three family units, only two of whom brought children along! (I don't count an exclusively breastfed baby as a germ vector.)
We are disappointed to have learned that the latest MIBG and CT scans reveal that Thomas's softball-sized tumor has not shrunk or died in any meaningful way, after four rounds of chemotherapy over twelve weeks.
Of the three options available, two oncologists so far and both of us parents agree that the best option is for Thomas to continue with chemotherapy, but with a new-to-him combination of higher doses spread over a longer infusion period (five days in a row instead of three days). The difficulty with this path is that with each additional round of chemo and with higher doses, it brings with it increased potential of long term side effects such as hearing loss and infertility.
After a little more consulting, we and the team will make a firm decision next week and chemo would begin October 5.
Chris and I gave Thomas the news by himself before telling his siblings--mostly to try to hold the attention of a five year old!--and he replied sweetly, "Oh, any number of days of chemo is okay with me."
We parents strive to understand how we are supposed to do our duties diligently, pursue understanding of our medical options, and take every step asked of our family while also being malleable and at one with God's present will, such that we could hope to say, "Oh, any number of days of chemo is okay with us."
"Then he said to them, 'My soul is very sorrowful, even to death; remain here, and watch with me.'” (Matthew 26:38)
Our family is loved and supported by so many people praying daily for Thomas by name and doing corporal works of mercy for us.
We will watch and pray--and research and pack backpacks for the hospital and run the home and do the income-earning job and smile to keep up the spirits of the children--ever while moaning Christ's words, "Father if it is possible remove this cup, but thy will be done."
From the hymn O God Beyond All Praising
"Then hear, O gracious Saviour,
accept the love we bring,
that we who know your favour
may serve you as our king;
and whether our tomorrows
be filled with good or ill,
we'll triumph through our sorrows
and rise to bless you still:
Scroll down to the bottom if you want to get straight to Thomas's medical updates!
1. Weekend
Chris was gone for four days last weekend, so we made our own fun at home. My 13-year-old big son and I went to the nursery--where we always have a delightful time over our shared interest in plants--and bought fall decorations for the front porch. Normally I don't decorate so early, but we have some plans in store for next weekend! We came home and also did some transplanting work.
2. Creativity
One of the children recently read a hagiography of St. Joan of Arc and thus Fort Orleans was erected in our back yard. The children have played there multiple times daily all week! There is a swept front path to a doorway in the fortress walls. Inside there is a soft carpet of green, a chair on which to sit, and a dining table where they take their meals. There is a holy chapel with pews. For those not practicing holiness, there is a nearby jail (lawn mower shed in background). Also, they have dug hidden caches in the ground and installed way too high in a tree a lookout seat.
We are planning a fun family event for the coming weekend which involved our practicing face painting!
3. Animal Antics
John's fish fry are still alive and growing! Meanwhile, Clara the finch has laid her third clutch of eggs, this time three! We won't find out until the end of 14 days whether they are fertilized or not, but it is wonderful to watch the male and female working as a mated pair, building a nest, keeping it warm, the male sitting on the eggs so that the female can go eat. You should see the animated excitement in Peter when he can bring his mate tiny strips of newspaper for her nest! Young ladies: men wooing you should behave as if you are the prize worthy of the equivalent of their "best strips of newspaper"!
In my husband's absence, we girls battled a still-alive, huge stinging thing in the pool as well as dodging a cicada killer in the garage. A mouse was found drowned in the pool, and it was given the honor of a handmade coffin and tombstone, as well as an originally written elegy read at his funeral.
I even experienced the thrill of rescuing a hummingbird trapped in our garage! The big garage door was wide open but the hummingbird could not figure out how to get out and was panicked, chirping loudly (when I did not even know they made noise), and occasionally finding respite by hanging on a chain. After giving the beautiful green fellow about an hour to try to get out himself, I got the pool skimmer to try to gently shoo him out. I ended up slowly and delicately putting the net of the skimmer right up to the hummingbird's belly and he stepped onto it! It took three different slow motion "rides" on the skimmer for me to transport him across the full length of the garage, at which point he flew free high up into an oak tree!
Zoom in to see hummingbird resting on chain.
4. School
I think Thomas is my first child to cleverly mark off each item he is counting so as not to lose his place.
I designed what I think is a good, solid curriculum for this year, but it is also mostly independent and I've had to let go of my ideals of teaching everything directly and intensely myself. Meanwhile, in our first month, I'm slowly finding moments of being more creative and doing more joyful interaction than I've done since the early years. For example, one morning I was reading to the younger boys about life in ancient Ur when I volunteered spontaneously to walk right to the kitchen and cook the two recipes provided: a lentil soup and faux locust biscuits (using almonds instead of bugs!) so we could learn what Sarah and Abraham would have eaten.
The children were delighted and thrilled at my spontaneity! (Who are you, Mama?!) We had the best time and joyful memories were made. Cancer is a powerful daily reminder that we truly have no idea how many days we have with our spouse or any one of our children. How would you want to have lived them?
This week we learned about bioluminescent beetles and other creatures. For once, I actually stopped to go look up on the computer more about the chemical compound luciferase and the delightful Brazilian railroad worm (Phrixothrix) so the children could see pictures.
Also, we started what I hope is a new weekly family conversation: I purchased the San Juan Beginning Apologetics Set, which is designed for high-school, but I think makes a fabulous parent-guided conversation at younger ages. My goal is that on Sunday evenings, Mom and Dad gather with the 11- and 13-year-olds and go through a lesson (two to four pages). We had our first gathering on Sunday and we had the most invigorating, animated conversation with the children eagerly asking some pent-up questions about the faith. It was wonderful!
5. Orchestra Starting
Youth Orchestras of Charlotte is starting its new season with many changes to try to meet COVID restrictions. Margaret (9) has been accepted into the beginner orchestra while Mary (11) has been accepted newly into the middle-level orchestra. The girls had a meet-and-greet with fellow orchestra members of Zoom and begin in-person rehearsals next week.
No more sharing of music stands due to "social distancing," so they now each have a portable music stand and we girls stayed up one night decorating their carrying bags with puffy paints. Fun!
6. Reading
After a friend recommended this novel to me, I recently finished The Mass of Brother Michel (1942) by Michael Kent. I devoured this book in a week and it is a fine, rare story I recommend every adult Catholic read. The story itself is a catechism, truth written into the story without being preachy. It is full of adventure, shocking twists and turns, but nothing outlandish or impossible and, in fact, it all seems like exactly what would have happened. The setting is southern France during the beginning of the Reformation. I never before thought of what it would have meant truly to live through that tumultuous time. I suggest the minimum ages for this book be 14-15, but probably late high-school is most appropriate (due to plot lines that require revealing sexual indiscretions/sins--nothing is graphic, but it is a sine qua non to the plot line). Adults will get the most of it because life experience brings the depth of this novel to life.
This week I finished reading God's Messenger: The Astounding Achievements of Mother Cabrini (2018) by Nicole Gregory. It was a gripping page-turner, which is a real find for a hagiography. While I enjoyed very much learning about a saint I knew nothing about, I read it hoping to be affirmed in the humbleness and invisibility of my life and homemaker vocation, but came away feeling more worthlessly unimportant than ever because Mother Cabrini was an incredibly accomplished little nun who established sixty-seven institutions, including schools, colleges, orphanages, hospitals, rest homes, and training homes for nurses; made twenty-three ocean voyages; and founded a worldwide order of nuns that persists to this day. (Written for high-school+ but I'd say anyone over 10 could read it, but keep in mind it briefly discusses illegitimacy.)
Almost at the end, we are now reading aloud the seventh book in the Narnia series to the little boys! (Okay, Joseph [7] is the only one listening.)
I'm currently racing through Outlaws of Ravenhurst (1923) by Sr. Imelda Wallace. This novel set in seventeenth century Scotland (also about the Reformation!) is a youth novel for middle school+ because of tense themes (e.g., an uncle severely beating and starving his nephew, a scene of attempted murder involving fire).
6. Medical Stuff
Thomas's COVID test on Monday went fine. Third time's a charm, so they say, and he finally was given the low-risk procedure for someone symptomless simply having a medical procedure (in which the Q-tip device only goes right inside the tip of the nostril).
On Wednesday, I headed back to the hospital for Thomas to have his port accessed and receive his nuclear MIBG injection. I'm telling you, it's a strange position to be a "frequent flier" (as they called kids like Thomas in the imaging department) for which getting an injection of RADIOACTIVE MATERIAL DELIVERED IN A LEAD SHIELDED CONTAINER is starting to feel routine.
On Thursday, Thomas had to fast and we realized a problem: Last time he missed one does of his blood pressure medication, his BP skyrocketed. How could we get his morning dose into him without grinding it up into peanut butter as per usual? He learned how to swallow his own pill, which we think is pretty great for a five-year-old! Then Chris took him to Anne Springs Close Greenway to distract him from fasting.
We had exceptionally good staff at each station within the hospital today. I was very pleased. Watching your child slip away into general anesthesia is never easy and walking away with an empty stroller does not feel good at all, but one does what one has to do.
Playing a geography game while waiting for general anesthesia
A lovely mother of eight babysat for me while I was gone, outshining me by far: the school and music got done, the house was immaculate, plus kids played Playdough and ran around outdoors, then they got to watch an afternoon movie, the girls did some sewing with the mama, and then she taught the group how to bake bread and baked seven loaves. Ha! My kids were so well cared for.
Another dear friend brought us a meal, a goodie bag for the children, plus her 14-year-old daughter baked a Brave Lion Cake for our Brave Boy. We were so touched!
Thursday evening, I had the respite of getting to leave the house to attend the Parents' Meeting for Confirmandi this year. Since the middle of March (6 months for those of us counting), I have:
attended Mass a handful of times,
gone to the hair salon with my daughters once,
walked with neighborhood women twice,
taken the children to nature areas maybe twice,
taken my son to the plant nursery twice, and
I don't think I can think of anything else.
I don't even go to the grocery store. What I do is go to the hospital. This evening, I got to attend a 45-minute meeting in a room full of adults, and then sit and chat animatedly with two girlfriends for 45 more minutes which was thebest medicine.
Unfortunately, overnight I experienced a night of insomnia and then falling asleep at 4:30 a.m. only to have a huge anxiety nightmare: the family made every room in our home messy, I discovered scary hidden rooms in my house that I did not know existed, someone was endangering one of my children who had a severe allergy, Make a Wish Foundation showed up for a photo shoot while we were in our pajamas, there were violent riots one block from our home, and I was so late I was going to miss Thomas's next doctor's appointment. Who knew my subconscious could fit so many of my fears in one dream?
On Friday, Thomas and I departed bright and early at 7:15 a.m. for his echocardiogram. It has been about 10 weeks since he had his baseline ECHO, so we watched this fun Ask Hermin video on YouTube to remind him what the test would be like. An echocardiogram and audiology exam will be done regularly to check Thomas for permanent heart damage and hearing loss from the chemotherapy.
And now, we all wait to hear from our oncologist today by phone about the results of Thomas's tests and to decide about a treatment plan! Jesus, I trust in you!
By the end of this week, we have completed four whole weeks of homeschool! I fear to say anything publicly in case school suddenly starts to crash, but, for the sake of any other blog readers experiencing medical crisis and seeking reassurance or ideas, I will share that homeschool is going well so far. I made some big changes this year due to Thomas's cancer treatments, and I think my changes have had positive effect.
Last year I had a great system going, but it required about three hours per weekend to enter all the data from the prior week into Homeschool Connections online, make adjustments, and then print out new assignment lists for the upcoming week. Right now, our homeschool cannot count on me to have three hours on any given weekend, plus a major theme this year is REDUCE MAMA'S STRESS.
This year, I have a standard check list for four grades, excluding Thomas's Kindergarten. Each week, I print them out without changes. If I have anything different to note, I write it down by hand for the child to read. The whole process takes a few minutes.
Over the summer, I made each child a Master Binder with Procedure Lists for each subject: that is where he will find the exact assignments. He will see on his Weekly List that he needs to do History four times each week, but he will open his Binder to read his History Procedure List to see what are the exact History assignments for the fourth week of school.
Joseph is in second grade and he has a list, but he only has to do school if I'm available (which, so far, has been three to four mornings per week). Shhhh, don't tell him yet, but after teaching nine years of homeschool already, I'm a lot more relaxed about second grade now!
Joseph's 2nd Grade Weekly List
The girls, in particular, have been setting an alarm for 6:00 a.m. to get in nearly two hours of independent school work before I serve hot breakfast. This is voluntary and due to their natures, not because I am Miss Homeschooling Mom of the Year. (Hardly.) The only thing I did that helped this along is that their task lists are exceedingly clear and readily available so the students can work independently. The girls have been finishing their school days by around 10:30 a.m. and, this week. For this week and last, they finished all their school for the week by the end of Wednesday, which is very helpful with our medical schedule.
I repeatedly take about one second to ponder whether this success means my school year is "just too easy," that "I'm failing the children who aren't achieving an amazing-enough education," that I need to add Latin back into their curricula, or do something to ladle on more hours of work . . . and then I remember CANCER. I remind myself repeatedly: I looked what constituted a level of a subject, I stretched it out over the academic year, and that is how I know what the weekly load should be. It is okay. The children don't have to be doing academics till late afternoon five days a week in order to fulfill their grade level learning.
Margaret's 4th Grade Weekly List
Mary's 6th Grade Weekly List
Our eighth grader's schedule is heavier and I do need to pay more attention to him, his schedule, and answering questions to tough schoolwork conundrums throughout the day. However, even he has been keeping up and usually finishing by early afternoon, thus greatly reducing stress in our family. If he has more time to go play street hockey in the cul-de-sac, all the better!
John's 8th Grade Weekly List
I am not yet doing a full Morning Basket Time at breakfast. I'm trying to cover one or two items per morning. We'll get there bit by bit!
This week we introduced the Word Up! vocabulary DVD, which is really fun and smart so far. The idea is to watch the DVD, then run some flash cards throughout the week.
The children are learning more than academics through this entire experience. For example, Thomas had some residual chemotherapy nausea on Monday, so I got pulled away from school simultaneously with Thomas thinking he might vomit and David needing a diaper change: as I walked away frustrated that there are not three of me, Mary (11) said, "Hey, Joseph, I'll dictate your spelling with you." She covered a subject for me by the time I returned! Lessons: keeping an eye attuned to what needs to be done in the surrounding environment, compassion, hard work.
Dictating spelling to her brother
I'm trying hard to learn how to be more relaxed and to identify relaxed moments for myself. One day I saw Thomas setting up a chess board and I thought to myself that that is valuable learning, he is learning to be an acute observer of patterns. People actually design entire workbooks of busy work for Kindergarteners to learn how to observe and imitate patterns.
Coloring covers actual Kindergarten skill sets: fine motor skills, identification of colors, study of images and patterns to copy.
One morning while I cooked, Thomas was watching Curious George when he started running about: independently, he gathered supplies and made a "solar cooker" like he saw on the show. Later, his siblings created two additional, much more ornate solar cookers and they actually made toast! Surely that is legitimate learning.
Thomas made a solar cooker by himself
Solar cooker made by Thomas and Margaret
Reading about Ancient Sumerians to the boys
The wonderful No Sweat Nature Study program kept releasing classes every two weeks all summer, but we only just got back to participating this week with a class on Hopping Insects.
11-year-old supervising the class for the little boys
Toy Cricket by Thomas (5)
Playdough Insect by Joseph
Invented Insect by Mary (11)
Class Notes by Mary (11)
Week #5, here we come!
2. Violin
Amidst the hectic beginning of a typical Monday morning, Thomas told me on the verge of tears that he wanted to learn to play the violin (crying as if I've been denying him violin for ages, ha!). When your five-year-old has cancer and wants to play the violin, he gets to play the violin!
We had an old 1/8 violin in the house, so I asked Mary to delay her school to give him his first lesson.
Thomas has been walking around the house for days now, "playing" violin, which sounds just exactly like a five-year-old let loose with a cheap violin and no training. Still, we all love it!
3. Half the Braces Removed!
John got the top half of his braces removed, although the bottom half seems to need six more weeks.
4. Thursday Clinic Day
Thomas and his Daddy went to clinic day on Thursday: it was meant to be just labs--in and out seeing nobody but the phlebotomist--but it turned out to be (surprise!) a complete clinic visit lasting two hours. Because Thomas's blood pressure was so frighteningly high last Saturday, they wanted a complete look at him and the oncologist wanted to chat with us. I was able to join them via video call and Chris and I came away feeling glad to have even more information from the doctor about possible treatment routes after the results from Thomas's scans next week.
Note: The above is one reason it is hard to manage child care. Normally I take Tom to clinic. I'm trying not to constantly hire babysitters ($$$), so I will gamble that Chris can take care of five kids while working for just a two-hour absence. But what if it turns out to be a four-hour absence because it became a full clinic visit instead of just labs? Or what if Thomas needs to receive a blood transfusion and now we will be there all day and we have no babysitter at home? These difficult childcare issues need to be juggled weekly, if not more.
5. Preparing for a Big Medical Week
Next week, Thomas has five hospital appointments in five days, so I am organizing and preparing like a general going into battle. At the Momcology cancer support group I attended via Zoom this week, the theme was Controlling the Controllable. There are many things that cannot be controlled in the world of cancer: How does one tell the difference and how does one control what one can control?
As I go into this coming week, I will:
Make sure the house is packed to the gills with groceries, much easy food, and I've arranged for some meals to be delivered by loving friends. I will plan every meal, including breakfasts, so as to reduce any energy spent thinking each day.
The house is all cleaned up. I will make sure there is no laundry built up.
We are on track with school. This weekend, I will print out the new school lists for the kids so they can work independently of me.
My husband filled my van with gas, filled the low tire with air, and vacuumed out the vehicle.
I've made sure Thomas has all his prescriptions filled.
I've lined up babysitters.
I will be packing Thomas's big backpack of entertainment, which we will be hauling around all week.
Our family and much of our community are praying a novena for Thomas.
6. Visit from Pop-Pops
Chris' father and brother joined us from Atlanta for Thursday night dinner. Chris will be joining them this weekend to spend some time with his dad after he so recently lost his wife and brother. I will be flying solo for four days . . . solo with six little chickadees!
7. Last Hockey Game
Friday night was the last hockey game of the summer season as well as the last game of John being in the 12U league before he will join the 14U/16U combined league. The two teams' were tied 4-4 games for the season, with John's team scoring 36 cumulative points against 35. I couldn't bear the thought of just asking another hockey parent to give him a ride for this special game, so I hired babysitters and took him myself. I do not understand hockey, but I watched intently in my ignorance and I took about 80 photos of my boy.
On to a new league, new friends, and new experiences next week!
