Chemotherapy Cycle #2

Chemotherapy Cycle #2 Day #1

Comparisons

It has been an emotional week for the family processing that Thomas's hair was still thick and perfect last Thursday on clinic day . . . 

Full head of hair one week ago

. . . and one week later at clinic day has only patchy peach fuzz left. The human head has one hundred thousand hairs on it, so that is a lot of strands of hair falling out into this mama's hands (a significant portion saved in a keepsake bag). I feel like it would require a lengthy essay of many pages to describe all the feelings, so I will say that it was emotional.

Doing art in the exam room

Slowly Understanding the Future

Two nights prior, I attended my first local chapter of a Momcology support group (via Zoom, in these zany times). Three of us attendees had children with brand new diagnoses from June. In contrast, several of the attendees were two years out from completing treatment. Some people were in the thick of things--one parent and child had not left her hospital room, not so much as going down the hallway, due to her immunocompromised state, for 94 days--and one woman's child had died the week prior. At first mystified why mothers two years past their children having cancer were in this support group, I came to gain nascent understanding over the course of the meeting that cancer doesn't just end, nor do the health effects. One mother's child was made disabled by the life-saving surgery she needed. All the mothers discussed the lasting emotional and psychological effects on their families and the other siblings, some good, some challenging. Meanwhile, the quiet possibility of relapse or new cancer remains always in the background. There were tears, but also much laughter among the ladies.

The first lesson I gained from the support group was that I had mistakenly been thinking of this cancer as a discrete episode that would be over by October. I had assigned the date in my mind, and it was based on everything going perfectly, and then I thought we'd be "done" and would quickly "get back to normal." Realizing that even a healing from cancer is bigger than I thought had my mind reeling and I did not sleep much that night.

Visiting the Infusion Room

I'm definitely still a Newbie Cancer Mama, but am learning rapidly. Today Thomas's chemotherapy was given in the infusion room at the clinic, not in the adjoining children's hospital: the four drugs were given all in one day where we were on site for nine hours.

The infusion room reminds me of a cul-de-sac with the nurse's station at the 'neck' of the room and six rooms in a circle at the 'base' of the room. Each little room of perhaps six feet by eight has three walls, one with a window, and one curtain. If the curtains were left open, all the patients could see each other, but the curtains are mostly closed.

We were in what I affectionately termed The Helicopter Suite, which was the one room from which a kid can watch the hospital helicopter swooping in and landing on the roof (and letting Mama pray a Hail Mary for the unfortunate child arriving). Also, Thomas could look down at power lines and a construction site, which provided much entertainment today.

For those who don't know, this is what I'm told will be the standard chemotherapy drill: We arrived, Thomas's blood was drawn, and saline begun because the patient needs to be hydrated ahead of time, as it helps with nausea, possible hydration loss due to vomiting, and it helps protect the kidneys from damage. The numbers come back good enough for Thomas to receive chemotherapy (meaning, the body has recovered enough from last time), so we moved from the exam room to the infusion room to settle in for the day. At that point, the oncologist called down to the pharmacy for the chemotherapy drugs (as one does not want the very expensive drugs to have been fulfilled already only to have the patient's numbers not be good enough and he can't receive the drugs that day!). We waited for the chemo drugs to arrive from the pharmacy, passing the time on a saline drip. Once they arrived, the nurse gives the anti-emetic drugs (in Thomas's case: three of them) through the IV, and then started running bags of chemo. At the end of it all, Thomas needed three more hours of saline to protect his kidneys from one of the drugs in particular, so we were there till closing time. Port access was removed and Thomas was sent home, our walking through the then dark, empty hallways, the last patient to depart.

Passing the Time

We were confined to our tiny room for nine hours and Thomas did fantastic, having a cheerful spirit the whole time except for about an hour when he was mysteriously withdrawn and quiet. He was visited by the music therapist . . .

Mysteriously withdrawn with the music therapist

. . . and played a new wooden game I bought him which involves sliding colored beads in grooves around to match the pattern on the card (of which there are 40 patterns).

In pre-COVID days, families would be together, so when Chris delivered our hot lunch we arranged to call the other kids at home via Facetime. Thomas eagerly gave them a tour of his room and showed him the IV, the line, and lifted his shirt to show his port accessed. (David [almost 3] called me twice more, I think, during the day to express, "I want you to come home right now! I want you!")

Thomas created a lot of art today, including making bead jewelry and drawing.

Robot drawn by Thomas (5)

Mary (11) had made an Activity Book for Thomas, delighting him with mazes, hidden pictures, mystery pictures, and open doodle pages.

Activity Book by Mary

And, yes, Thomas watched some television on the iPad, too, today!

Hidden Sorrows

The day went so beautifully for Thomas, but not so for other tots in the infusion room. I noticed by the afternoon that little tykes were crying more and I was hearing vomiting beginning. A couple of voices were so tiny. One baby had only the words "Mama" and "no" so she may have been barely a year old. It broke my heart to think of all the wee children who get cancer: it cannot be explained to them, they cannot understand the poking and prodding, the pain and vomiting, and it must be terrifying.

Two patients out of the six infusion rooms ended up transferring to the hospital. It was sobering to see what cancer treatment looks like further along the journey when the body is weakened. One dear boy was Thomas's age, but weighed much less and was on TPN, which is something some cancer patients need to get enough calories to survive. By afternoon, he began vomiting so often, it was worse than any Norovirus attack I've ever seen sweep through our family. Then a cascade of complications occurred which I suppose I will keep private for that family, but, of course, I heard every single thing on the other side of the curtain. The whole area filled in an instant with medical professionals trying to get him stable and 911 was called to transport him safely to the hospital . . . because, it was explained to his parent, he needed that level of medical care just to be safe going from one building to the next one over. Hearing that chilled me. I was crying my eyes out and praying while dear Thomas was oblivious, singing quietly to himself and eagerly watching the construction workers through the window.

Then in less dramatic fashion, a teenage patient also ended her day by being transferred to the hospital, although her mom was able to walk her over in a wheelchair. The poor young lady had been experiencing numerous bad symptoms since arriving that morning, and is now facing tonight a lumbar puncture, CT scan, and other tests to see what is going on. I can only start to imagine the fears the parents of those two children are feeling tonight by their sides.

These young patients are suffering daily in every city with a cancer center.

Home, Sweet Home

Thomas had not experienced any nausea all day--and, in fact, ate lots of food--and I was aware that his three anti-emetics were due to be re-dosed as soon as we walked in the door at home. However, such knowledge did not translate into my realizing he should be holding an emesis bag for the drive home, so my sweet boy vomited really big on the car ride. He took his three meds, ate dinner, and went blissfully to sleep in Mama and Daddy's bed.

Our precious Thomas, who has been my most independent sleeper since babyhood, moved into our room right after his surgery. He has informed me several times with a big smile, "I am going to sleep in your room until the lump in my belly is all gone. Then I will go back to my room." We welcome him with open arms.

Sleeping in his dinosaur pajamas with emesis bowl by his side

Medications

Back at home, I am now juggling six prescription medications for Thomas, all on varying schedules of different times and different days of the week. I've set alarms for myself and am writing everything down in a medication journal.

Thomas is now on an anti-hypertensive medication. His blood pressure was scary through-the-roof today at every measurement taken in every manner. The oncologist described the "rebound effect" that he thinks happened to Thomas. His BP was very high due to the tumor these past seven weeks since diagnosis. He started his first round of chemo and initially it starts to reduce the hormones coming from the tumor, so there is a dip in the BP (which we saw last week). But the chemotherapy causes inflammation (which is necessary to work) and the tumor gets temporarily inflamed and bigger. Since Thomas's tumor is encased around major abdominal arteries--actually grown into the muscular sheath of the arterial walls--if it becomes inflamed, it is going to compress harder those arteries, thus increasing BP even more. Anyway, regardless of the exact mechanism of action, now the little fella is on a BP medication daily until the tumor is significantly, clinically reduced in size and releasing its stranglehold on those arteries.

Lastly, we learned of a business tonight that we did not even imagine existed but it now makes perfect sense that it does: an on-call specialty pharmacy for very specialized medications needed urgently. Apparently, Thomas was supposed to start taking a "booster" after each round of chemo in order to boost his white blood cell count. It should have come in the mail to me and then the staff would have taught me how to give the injection. Meanwhile, I knew nothing about any of this until we were discharging after 5:00 p.m. today. Somehow it fell through the cracks. (Mistakes were made.)

As I left, the nurse began texting the oncologist at home and making phone calls. By the time I was home 30 minutes later, the first of three phone calls from said pharmacy were made to our house over the course of just one hour. We received a Robo-Call from the pharmacy announcing that it had already spoken to a live person at our health insurance company in such mysterious department that stays open late or all night for such approvals. Then, the first live call that came to Chris was from a subcontractor of his employer, a company (24/7?) that handles the finances of paying for this $7,000 per shot medication. Lastly, we were called by a subcontractor of the mail-order pharmacy, the subcontractor that handles the Really Special Medications. The special medication will be shipped overnight from this mysterious pharmacy somewhere in the country in order to arrive on our doorstep by 10:30 a.m., as this medication is supposed to be given 24 hours after chemotherapy ended. (Everything in the oncology world seems to be timed precisely.) I will drive back to the clinic where they will train me how to give a shot to my beautiful boy (oh my, please don't let me faint). I was also given the direct phone number not just to this specialized pharmacy, but to the oncology department of the pharmacy, where I can call 24/7 and speak live to an actual pharmacist who specializes in cancer with any medication questions about anything. Who knew such a benefit existed? I can tell you one thing: I appreciate our country's medical system under capitalism and prefer this service to socialized medicine!

Gratitude

We have so much to be thankful for. The staff today were very professional and kind. The way those nurses circulate among the infusion stalls, asking continually to help us with our every need or whim reminded me of the most skilled waitressing staff at the best restaurants. I'm grateful for speaking English, as one of the fellow patients today spoke only Spanish, so an interpreter had to be brought in both to talk to the patient and parent throughout the day and then also to call home to the family waiting for news to explain what was happening: what an added vulnerability for that poor family. I'm grateful to Chris' employer for flexibility so he could bring us hot lunch. I'm grateful for having a husband at all through this journey.

Thank you to our wonderful babysitter today, who even spent an hour and a half scrubbing exploded caramel off of my kitchen, and thanks to the C family who had a meal delivered to us hot and ready!

Expectations

I was prepared by the oncologist that the particular drugs in this second cycle have stronger side effects and to expect the next four days or so to be pretty yucky for Thomas. We are ready to hunker down. Get my snuggling arms ready!