Gloria in Excelsis Deo: {SQT} Fourth Cycle of Chemotherapy

I posted about our first half of the week earlier here.

Then on Thursday, Thomas went in for three days of chemotherapy.

Day #1

Miss Hailey, the Child Life Specialist!

The Nurse Practitioner gave Thomas his very own real stethoscope. Don't be surprised if, when you next see Thomas, he tries to listen to your heart!

In order to try to stop Thomas's dangerous histamine reactions, they excluded two medications (chlorohexadine and decadron) plus added three pre-meds to blunt his immune response (BIG dose of Benadryl, Pepsid, which is an H2 inhibitor, and Tylenol). Therefore, we still cannot know what was the culprit: The chlorohexadine that was removed? Or the Etoposide that Tom continued to receive, but maybe his reaction was covered up by these other meds? Either way, my pumpkin fell asleep for two glorious hours and had no allergic reactions.

Apparently, some kids undergoing chemotherapy don't like to see blood or look at any procedures (that would have been me!) and some kids are "Watchers," as they're called. Thomas watches everything, he always declines when the nurse offers to count ("no, just do it!"), and he helps with everything he is allowed to help with. I love watching him get his port accessed or have changes made to his line because Thomas knows exactly what is going on. "You didn't put a green cap on there. Don't I need a green cap?" He pushes in his saline flushes, draws back to check on his blood flow, pushes in his Heparin . . . just anything he is allowed to do, he does it! We have phrasing to tell him when he is not allowed to help: "This part is the job of Miss So-and-So."

While I was gone, our daughter Mary (11) saw a New Baby stork sign on our neighbor's lawn, the baby boy being born only the night prior. She baked blueberry muffins with streusel topping and arranged them in the shape of the letter P (for the baby's name) and walked it over for the family. Precious!

Anti-emetic drugs are wonderful things. Even before Thomas ever had cancer, we would use Zofran off label for vomiting illnesses, but it was designed for chemotherapy patients. I have said for a decade that the inventor of Zofran deserves the highest award in medicine possible: this invention truly saves lives and makes lives decent and livable to boot. We came home and Thomas felt well enough for us to go on a family walk, which felt good after I sat in a chair for eight hours straight.

Thomas did begin throwing up, even staying on schedule with his various medications, but at least it would "sneak up on him" (at that point) versus him feeling absolutely miserable for hours.

Day #2

On the second day of chemotherapy, Thomas began to experience more typical nausea and vomiting and it got pretty rough for our sweetie, but he never once complained. I asked our nurse of the day and she confirmed that the vomiting will get worse on Days 2 and 3 and continue a couple of days beyond.

Thomas had the idea to dress up in his doctor's scrubs outfit and wear his new, real stethoscope so he could delight his nurse friends, but then he vomited all over himself in front of everyone as I wheeled him into the lobby of the medical building. I got him cleaned up and changed while I cried because it was so poignant to me that he couldn't show his costume to his buddies.

Once arrived, he had a visit from the music therapist, which he enjoyed, but one can tell by Thomas's flat affect that he was definitely feeling "puny." When he gets this way, he won't even speak, but just points at what he wants.

One of his new pre-meds to prevent his histamine response is a massive dose of Benadryl, and I'm grateful that one of the side effects is that he sleeps through a couple hours of his chemotherapy. Sadly, he kept being woken from his deep sleep by vomiting.

It is so hard to see and listen to the babies receiving chemotherapy. At least I can entertain Thomas and our boy understands pretty well why he is receiving these medications. I watch the tiniest of babies and their mamas can only rock them and hold them for hours while they cry, unless they blessedly fall asleep. I see the younger toddlers yelling "no, no!" and begging their mamas to save them so that a team of nurses has to do whatever chemo procedure needs to be done. It is absolutely heartbreaking.

Listening to the babies makes me want to jump out of my body and escape, so I reflect on what a special breed it takes to be a nurse in pediatric oncology. They are unfailingly kind and gentle, like Kindergarten teachers, and they have to listen to this and even perform those procedures for the good of those babies, to try to save their lives. I have yet to see one who has become mean and callous from it: they're so kind.

One baby receiving chemo on that day spiked a fever, so it was not a 911 emergency, but I watched as a hospital room was booked for her next door and her mom got ready to go check in and stay a few days. Reality lays heavily on us.

Our babysitter at home had planned an end-of-week fun activity for good behavior (kids who earned tally marks for bad behavior that week missed the beginning minutes of the movie). The children baked and decorated rabbit-shaped sugar cookies and watched The Velveteen Rabbit (2009), which certainly is not faithful to the book, but is a delightful period piece that hits all the same elements of the story.

Thomas enjoyed decorating cookies, but could not eat them as he kept vomiting and could not keep any bland food down. (I had him decorate at his own segregated table from the others in case he suddenly vomited and contaminated their cookies.)

Big sibling's rabbit

I was so grateful when Thomas fell asleep for the night so he could be relieved of some of his misery. As I closed up the house, I left a big sibling reading quietly in the room to babysit him at all times until I returned in case Thomas woke up vomiting, which he did throughout the night.

I basically did not sleep that night because of my sorrow and just held on to a wooden "clinging cross" in between helping Thomas.

Day #3 and Blood Drive

Thomas's vomiting was very frequent on Saturday and he could not keep any food down, despite being on anti-emetics strictly on schedule.

Saturday was the day of our neighborhood's annual blood drive, which was held in honor of Thomas and recognition of pediatric cancer this year! So many people signed up that the organizers expanded the hours of the drive, and then brought along a second bus to accommodate walk-ups. I don't know how many people ultimately donated blood, but 100 people (including my husband) were signed up to do so!

We made up a thank you flier for the folks donating and dropped those off, as well as personalized pencils I had made up that say, "I'm a prayer warrior for Christ! May God's will be done on earth as it is in heaven!"

Then right before I had to take Thomas back in for his chemotherapy appointment, our whole family stopped by as a family to thank the blood drive organizers.

A very kind nurse (perhaps the head organizer of the blood drive?) empathized with our parental fears about Thomas and shared that she is the mother of Chynna Deese who was murdered in Canada just over one year ago. It was a reminder to me that when dealing with others, one rarely knows their private lives and what burdens they are carrying.

This was our first chemotherapy on a Saturday when the oncology clinic is closed, so we visited the hospital infusion center for the first time. The infusion bays are much bigger there, the size of a full hospital room, but I felt so uncomfortable and missed "our people"--all the nurses and staff who have earned our affection and trust. Also, there was only one nurse and one lower-level assistant running the entire hospital infusion center, whereas the clinic infusion center is staffed by probably 10 or 15 people, so I felt vulnerable in case Thomas were to experience another allergic emergency: from where would the giant team of people swarm to help him?

Our appointment was at 3:00, but it wasn't until 4:30 that Tom was actually receiving his chemo, which gave us time to play a new Holy Heroes card game about the works of mercy. It was great that even at 5 years old, we had numerous conversations about the particular works of mercy, comparing the pictures on the cards, describing why that scene represented such-and-such work of mercy.

I appreciated seeing small smiles because by the third day of receiving chemo, Thomas is nothing like his normal self. He doesn't smile and rarely speaks, instead just pointing at what he wants.

For 4 weeks of testing and 10 weeks of treatment, Thomas has been completely docile. While he is eager to know all the medical facts and reasons behind his procedures and medications, he has never protested . . . until Saturday. I've wondered about that, especially when I can hear other children behind curtains in the bays screaming and kicking, "No! No, Mama, don't let them do it!" On Saturday, we arrived at the infusion center and Thomas needed to take his first pre-med orally. He said to me flat out, "No, I won't!" I sat with him gently and talked through it and he was able to verbalize, "I won't take this medicine because then I won't be able to have my chemo and then I won't have my shot tomorrow. I don't want a shot!"

Of course, one can imagine my mother's heart and how sad I was about his fear. Also I know much more than he does how much more difficult treatments do and could lie ahead. We got through it and after about ten minutes, Thomas willingly took the medication, but I shouldn't take his docility for granted.

I don't like the Cars movie, but I assented to Thomas watching it for what would have been the first time, knowing that the medications would make him fall asleep within the first ten minutes and then I turned it off. Ha!

Now that Tom is sleeping for portions of his chemo, I can actually pray a rosary instead of constantly entertaining him.

Thomas kept waking to vomit during chemo. This is a hard cycle.

His blood pressure spiked, at its highest measurement 163/106, which is very alarming. Thomas has chronic hypertension because of the tumor and is on twice-daily medicine, so it is most recently around 120/90, which is comparatively better, but high for his age and size. Reasons his BP was so high last night could have been:

he missed one single dose of his BP med that morning when he could not keep food down
chemo itself can raise BP because of the infusion of fluids (but it's never happened to him before)
chemo causes temporary inflammation of the tumor before it dies back, so the tumor is temporarily bigger and squeezing tighter on the abdominal arteries it is encasing

The readings were all so high and this was with Thomas sitting in a chair for hours, asleep for most of it--it's not like he was running around. Chris had to drive Thomas's BP medication to us and I was so grateful we had a nighttime babysitter with him so he could leave the children, who are not allowed in the hospital due to COVID restrictions. After repeated monitoring over a couple of hours, Thomas's BP finally lowered to 148/92 (ha, hardly low) so the on-call oncologist allowed Thomas to go home at 8:00 p.m. instead of facing staying overnight in the hospital.

Still, Mama is nervous and a child-sized BP cuff is winging its way to us from Amazon so I can monitor his BP at home.

Sunday

Thomas vomited several times overnight, but woke up perkier. I was sitting in the rocking chair, watching him as the sun rose, when he sat bolt upright in his mattress on the floor of our room, and asked, "Mama, were there ever dinosaurs here?"

"Yes, there were dinosaurs in America."

"Then I change my mind" [about what he wants to be when he grows up]. "I want to be a scientist who digs up dinosaur bones. Let's go."

He wanted to start his archeological dig right away. His dad humored him by getting dressed and going outside at 7:00 a.m. Thomas is not allowed by the medical team to actually dig in dirt because of his compromised immune system, so his big brother did the digging for him with the promise that any dinosaur bones found would be Thomas's.