{SQT} Chemotherapy Cycle #6

1. Weekend

Click here to read all about our fun weekend!

Various children had face painting!

2. Monday

Thank you for the prayers! Thomas's platelets rose beautifully so that he was able to start his sixth chemotherapy cycle.

Some medical updates: 

• For the first time since diagnosis, today the oncologist palpated the tumor and felt it was different. He hopes the different feel indicates that it is, in fact, responding to this new combination and stronger dose chemo (Cycles 5 and now 6). Apparently, Thomas's catacholamines (a hormone released by neuroblastoma tumors) has remained "very high" through the first rounds of chemo, which was another indication that the tumor was not responding. The doctor is very interested to see what today's catacholamine results are when the test results come back in a week: if the hormones are lower, that is another clue that the tumor is responding.
• Thomas's next MIBG scan date is Nov. 12 and we will have a big medical pow-wow on Nov. 13.
• Thomas's surgery will probably occur the following week.

Recently Thomas has begun showing resistance to medical treatment for the first time and, while it is challenging, I am even more grateful it took five full months for this to manifest. What a patient boy! He struggles with oral medication, sometimes cries, and told me a week or so ago, "Today is the last day I'm going to be brave." 

When we reminded Thomas on Sunday night that he would be going in for chemo the next morning, he expressed distress that he did not want to be "connected to that pole!" I held him and mirrored back to him that he was telling me he did not want to go get chemo and that parts of it are really not fun. Then I asked if we could please list some things that are good or enjoyable about going in for chemo: we get to do art and activities, we get to see some friends we like (Miss Hailey, Miss Leigh, Miss Annalise), and so forth. Then when I had gotten Thomas past that moment, I told him it was time to pick his outfit for the morning. He said, "Picking my outfit is a good thing about getting to go to chemo." How precious is our boy! If only we adults could remember that even getting to pick one's own outfit can be, is, and should be a blessing as there are plenty of people in this world who do not have even that freedom.

On Monday morning, Thomas resisted me putting EMLA cream on his port in hopes then he would not go to chemo. Then after his port was accessed and it was time for the nurse to attach the IV to his port needle, he resisted again and clamped his shirt down. It's a new time of challenge for our sweet, growing boy.

Making print artwork with Miss Leigh

"Mama, I'm ready for a nap now."

Clinging to Mama's neck fast asleep after a 15-minute crying jag

I came home to a very upset little three-year-old. At one point while unpacking my backpack, I offered David my pink parking stub from the hospital parking lot, telling him it was a "very important piece of paper." He carried it with him all that evening and much of Monday, his little talisman of Mama.

In the evening, John was able to attend the first altar server practice of the new academic year and the annual Challenge Ceremony for Fraternus, a much anticipated, formal event with the priest. Meanwhile, Mary was able to attend a nighttime hot dog roast and corn maze event for homeschoolers sixth grade and older: so much festive fun!

3. Tuesday

Thomas felt poorly all day, which made for a lot of quiet and stillness in our little infusion bay. For the first two hours, he would not leave the safe refuge of his stroller--a first for him--and the infusion nurse was so accommodating about simply working with him in there. The Child Life ladies came by to visit Thomas, but he would not speak to them and just shook his head no from deep within his stroller: he was not receiving visitors.

We did make a calendar to help this little five-year-old, who naturally does not understand time yet, count down to when the chemotherapy will be done this week. He had never before asked repeatedly when this will all be over.

I was grateful to arrive home before dinner, but David (3), who had had quite a tearful day wanting me, was so mad at me that he kicked me away and wouldn't talk to me for about the first hour. Thankfully, I won him over by bedtime when we read Dear Zoo, which we read Every Single Night.

4. Wednesday

Today was the first time ever we were put in one of the two actual infusion rooms as compared to all the infusion bays, which are small and simply have a curtain to close. If one has to sit at chemotherapy all day, this kind of room is the way to go! It had a comfortable rocking chair, plus a chair like a medical Laz-Y Boy that electronically reclined and had numerous massage and heating settings. There was also a full bed on which to nap!

We caught up on Thomas's Beads of Courage.

Thomas briefly played his favorite card game Dino Dig with Miss Hailey and he just barely started an art project with Miss Leigh before the terrible feelings settled in for the day.

Thomas sat quietly all day long and virtually never spoke even to me. He would not answer my friendly questions, he would not engage in fun activities, he just sat silently and ultimately watched TV because it was the only thing that would distract him. He felt miserable.

This week is reminding me that childhood cancer is definitely not cute.

And this poor child still has two more days to go.

His little body is juggling eight daily medications--some incredibly powerful--he has to urinate about every 30 minutes all day because of the massive IV fluids, and he is being woken every three hours all night, being off routine, and barely eating.

5. Thursday

Today Thomas would not emerge from the sanctuary of his stroller for almost three hours. He kept the umbrella down and the infusion nurse kindly worked with him hiding deep inside. Then she brought him two Matchbox cars and some Playdough. His first emergence was just his little arms sticking out, playing cars. He allowed me to play with one car and we would silently drive them back and forth. He did not want any talking.

He allowed the umbrella to be pulled back for us to play Playdough together, again without words, but he was emerging, much to my relief.

On the infusion ward, Thomas is known as the kid who runs ahead of me pushing his IV pole. He is given so many fluids that he has to go to the potty about every 30 minutes all day, and he has always run gleefully ahead of me, who is trying to keep up, terrified he will yank out his port needle, and my calling, "Thomas! Slow down!" Well, today was a first: Thomas would not allow himself to see any part of the infusion center except our bay. Each time we had to visit the restroom, he would have me walk ahead of him, with him holding onto my shirt, his eyes shut tight, and his face buried into my back. We shuffled along, there and back, him intent on seeing nothing. We'd get back to the infusion bay and he'd keep his eyes shut while saying, "Close the curtain, Mama." It was truly poignant.

Mid-day, we got to watch TV for about an hour, which was the best of Thomas's day before taking fitful naps with repeated tearful wakings.

Even asleep, he clings to his emesis bag.

The afternoon was the worse: he was too miserable by then even to watch TV. I offered so many options of entertainment, activities, or even my just holding him, but all he wanted to do was sit silently and stare into space for the last couple of hours. It was so hard on my heart to watch a tiny five-year-old feeling that way and to know that all I could do was sit silently and hang on the cross with him.

Back at home, our wonderful babysitter carved pumpkins with the children on my behalf. I missed the annual ritual, but knew Saturday was too chancy to delay the project, what with the older kids going on outings and Thomas probably feeling sick.

An Evening Conversation

Over the evening, Thomas perked up more and more, and he ate food (!), back to his usual self. When it was time to go to bed, I told him to pick his pajamas and also lay out an outfit for Friday morning. He protested with a stamping foot, "I won't pick pajamas! And I won't go to chemo tomorrow!" With tears springing to his eyes, he appeared overwhelmed by his anger and he fell into my arms as I sat on the floor.

"And, Mama, I told you not to pack cookies, but you did!"

Mama: "Well, honey, I brought them for me, not you."

Thomas: "I told you not to bring any food from the pantry!"

Mama: "Thomas, I get to eat, even if you're not going to eat. You don't get to make that rule."

Thomas: "But the cookies smell bad and they make me feel sick!" 

I felt terrible, realizing this was a known issue of common feeds smelling awful to patients on chemo. "Oh, honey! We can do something about that problem!"

Thomas: "But I also feel sick even when I don't smell the cookies."

Mama: "Do you know why you feel sick?"

Thomas: "No."

Of course, we had discussed chemo and its effects numerous times over five months, but five-year-olds need to hear things numerous times. I explained the mechanism of chemotherapy again and ended with, "Honey, it makes Mama cry to have to give you such strong medicine and it even makes the doctors cry to have to give this medicine to help little boys and girls."

Thomas, who had been curled in my lap, clung to my neck and just began openly crying.

Mama: "Do you know what is very confusing? Normally when someone is sick, he feels really yucky. Then he takes medicine and he feels better! So, he feels good about taking medicine. But your cancer lump does not make you feel bad. You don't feel anything about it. However, the medicine you have to take makes you feel terrible. Do you know that some kinds of cancer lumps make people have symptoms? They feel sick and bad and yucky and that is how they find out that they have a cancer lump. But other kinds of cancer lumps--like yours and some other types--do not have symptoms and they grow and grow really big before anyone ever finds them. That is part of what makes it so hard to take your chemotherapy that makes you feel so sick."

Thomas silently took his wet face out of my neck and without words went to the bureau, picked a pair of pajamas, and disappeared into the closet to dress.

6. Friday

On the drive in to chemotherapy, I took the chance to make sure that when Thomas was asking whether today was "the last day of chemo," that he understand it is the last day of this round of chemo and not necessarily forever chemo. So, we made a list of "things we know" and "things we don't know." Coming out of the long conversation, I felt good that Thomas seems to know all his upcoming appointments all the way to his next (fourth!) MIBG scan and the oncologist giving us the plan on the following day. He said, "I sure hope the chemo has shrunk the tumor! I know the doctors hope that, too."

It had been an exhausting week and Thomas was napping already at 8:00 a.m. in the waiting room.

The final day went much better. While I could not convince Thomas to dress up for Halloween on this October 30th, most of the oncology staff dressed up and it was so cute and cheerful. Thomas was given a really wonderfully stocked bag of Halloween candies and toys: these items made him smile and laugh!

Thomas was cheerful and energetic most of the day! What a breath of fresh air to see him talking rapid fire again. He played card games with the Child Life ladies and watched a movie snuggled on my lap. 

He even asked to see the music specialist and they had a wonderful time playing ukuleles together. Thomas was settling in to play piano with a huge keyboard across his lap when his latest medications hit him like a ton of bricks. He said, "Mama, will you please dim the lights? My eyes feel hot." And that was it, he was fast asleep within seconds, sitting there. The Child Life ladies are entirely accustomed to this, so the music lady quietly removed the piano and tiptoed away.

Passed out asleep, the piano keyboard removed quietly from his lap

Thomas was triumphant to arrive home and cross off FRIDAY from the chemotherapy count-down calendar he made himself this week. He completed 40 hours of infusion! I am so proud of him! 

7. Gratitude

I'm hesitant to list out all my thanks for community support this week because my brain is basically mush at this point and I'm afraid I will forget someone, but here goes! So many people are helping Thomas in this fight for his life! 

Just this week alone: Parishioners brought us meals all week and the leftovers will feed us for days of dinners to come yet. Last weekend, I needed several items and various neighbors whom I hardly know lent them to me on a moment's notice. Friends this week gave us meal gift certificates--and one restaurant owner who is a stranger to us heard of Thomas's cancer and gave us a gift certificate! Even more Masses are being said for Thomas--including some being arranged to be said by the Underground Church in China! Some of my particular Prayer Warriors texted and emailed me Scripture and meditations, which help lift me from the darkness. At least two Medical Mamas helped me talk through things. You may not have known it but when I was lonely or desperately seeking distraction, friends who received my texts and chatted back and forth with me while I was in a hospital room trying to be silent for Thomas were of aid to my spirit. Numerous folks in our community gave rides to our older children going to their activities this week. Thomas received gifts this week from three people. I have been planning so many events, but simply fell short finally of being able to do anything for the Feast of All Saints this upcoming Sunday: and then (not knowing this) a couple friends of mine put together a whole All Saints party kit with games, prizes, and Soul Cakes and dropped it off at my home. And on the very day that Make a Wish Foundation emailed us to say that all travel wishes are shut down due to COVID restrictions, not even to be considered discussing until summer 2021, longtime friends of ours (totally unknowing about the Wish Trip delay and working through the Holy Ghost) emailed us that afternoon offering us a week in their beautiful beach home as soon as Thomas's treatment schedule will allow.

May God reward you all!

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