{SQT} First Weekly Clinic Day!

Today was Thomas's first weekly clinic day!

Cancer lingo . . . one says, "This is a clinic day" or "We're going to Clinic." That means seeing the oncologist in his clinic (doctor's office), instead of going into the hospital proper. Now you, too, can sound 'in the know.'

On Day 8 of his chemotherapy cycle #1, Thomas went for a clinic day. The purpose of these is to check his blood counts of, oh, just about everything. Very important are knowing his absolute neutrophil count (ANC) and his absolute lymphocyte count. If Thomas's numbers were to be too bad or low, he might receive certain medications or even a blood transfusion over four hours. I always need to bring enough entertainment to keep a four-year-old occupied sitting in a chair for half the day, just in case.

Lesson learned and learning: Scheduling babysitters for clinic days will be interesting. I think I will simply have to hire someone who could be there all day, just in case it turns out to be a long day. Today our dear babysitter had an appointment, so had to leave before lunch. It was fine, I was home, but I discovered that it's really exhausting to come home from clinic, have all the new data and appointments in my head, and move straight into making lunch for the kids. Note to self: Do not schedule Instacart to deliver a week's worth of groceries for eight people at 1:00 on a clinic day, when I've barely walked in the door.

Thomas did beautifully with his blood draw. While he does have a port (central line to his heart), they do not want to access that for simple blood draws because every access is a risk of infection to the heart. So, this was a blood draw from Thomas's hand (his preference) and, after a few seconds of anxiety, he did not feel pain and reacted so very well. His daddy asked him, "You are telling me that that did not hurt, so next time we are here, is it alright if I assure you that it did not hurt last time?" Thomas said yes.

Afterward, he was allowed to walk his own vial of blood down the hallway to the laboratory where the Blood Lady (don't know her title!) let him place it on the centrifuge thingy and then allowed him to look at his blood under microscope! The staff told me that Thomas was the first little kid to do that.

Looking at his own blood

Lesson learned and learning: For the first time in all these doctor and hospital visits, I packed enough snacks! Kudos to me! But then Chris, having come in his own car, had to depart before we were done and he chivalrously took my heavy bag with him . . . and with it took our snacks. Note to self: Bring snacks, keep snacks.

Thomas's numbers were great today, which the staff guessed the minute he walked in the door grinning and with a skip in his step. They have been clear that his numbers will keep going down the next few days (Thomas should not leave the house or see people) before starting to rebound early next week. (Tom is being asked to go back on Monday for a quick blood test before his regular clinic day next Thursday.) Also, with each round of chemotherapy, his body won't be as strong. We are told to expect at least one hospital stay for fever, at least one blood transfusion, at least one delayed chemo cycle because of "not making his numbers," and so forth. The docs say they don't really see kids go through four rounds of chemo without experiencing those difficulties.

I had mis-heard or mis-remembered the anticipated likely days of when Thomas would lose his hair. The oncologist clarified today that he typically sees kids on this regimen lose their hair between Days 18 and 21 of the first cycle, so that would be in just over a week, right at Thomas's fifth birthday (sad!). Of course, there are variables: not everyone loses their hair completely bald or loses it at the precise time, but it is good to be prepared for what is typical.

Lesson learned and learning: Thursdays are supposed to be our vacuuming days and Fridays our bathroom-cleaning days and the day I receive our grocery order for the week. Thursdays or Fridays are also supposed to be Thomas's clinic days going forward. I'm going to have to shift our cleaning and grocery schedule around because even an easy clinic day was very tiring for me. We met with at least 11 different staff members there: nurse who takes vitals, child life specialist, music therapist, blood draw lady, blood lab lady, registered nurse, dietitian, dietitian intern, social worker, oncologist, lady who manages prescriptions.

Lesson Learned and Learning: I suspect that clinic days are going to become Family Movie Afternoon days and Restaurant Gift Card nights.

This afternoon, Chris has taken the kids swimming--something he's trying to do daily for Thomas's health (so important to keep up low-impact exercise). I rested in a dark room for an hour. I've put away most of the groceries, but the rest remain. I need to empty the fourth dishwasher load today and get to making dinner (at which time I will be teaching the big kids how to manage pizza night!). I have a stack of eleven Amazon boxes to open, some of whose contents I know (school books!), some I don't (gifts from you loving people!). I have today's laundry load to do, yesterday's laundry to put away. Is it bedtime yet?

A gift from the oncologist today

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