Second Weekly Clinic Day

Chemotherapy Cycle #1 Day #15

Today Thomas had another clinic day.

While he had been excited to go, he was strangely quiet the entire time and mostly would not talk to his favorite medical personnel. We noticed it and the staff commented on it. Since coming home, he is singing at the top of his lungs Dean Martin's That's Amore!, so all must be well now.

Disappointing News

Thomas's ANC is low at 200 (down from 500 on Monday), which we were told by his medical team that this is in line with his treatment, however we expecting it to be on its' way back up by this point. ANC is a strong representation of immune system function and normal is 2,500-8,000, while 500 and below is "not functioning." We had anticipated that Days 8-11 of any given chemotherapy cycle would be the nadir, so we thought Thomas's numbers would have rebounded nicely by today, Day 15.

We had almost taken Thomas to Mass last night, his having missed so many Sundays, and are now relieved we did not (due to Chris's hesitation, actually!). We were going to take the family to a really fun event hosted by Children's Cancer Partners this coming Saturday, but the oncologist said no, that would not be prudent at all. Another Sunday Mass will be missed.

This is a little dampening for me, as I somehow thought that typically Days 12-21 would be good and safe for Thomas to be out in public more, seeing a little friend, attending Mass. Now, we realize that we can't assume that at all. I wish there was some rapid blood numbers test to do at home! If we have lab numbers from several days prior, maybe a particular day is a good day to go out, but how could we possibly know if the numbers have rebounded or not? It is subduing to be learning about the long haul ahead, the unknowns and lost opportunities that will arise.

The nurse gave us the little speech again, which I now recognize I've heard numerous times, that this first cycle represents his best numbers, and "with each chemo cycle, his numbers will go lower and stay lower for longer."

Encouraging News--Which Is More Important!

That said, there was good news, too!

For the prior week, Thomas had had no night sweats at all. This represents that the tumor is shrinking and therefore secreting fewer hormones surges (that would soak Thomas's pillow cover each night).

Today Thomas's blood pressure was normal for the first time! For the 5-6 weeks since Thomas was diagnosed with cancer, his many, many blood pressure checks have been dangerously high (high 140s over 100s). This was caused by some combination of the tumor's hormones and the fact that the tumor is/was encapsulating and squeezing some major abdominal arteries (think of squeezing a hose full of water and how the pressure would increase). Today Thomas's blood pressure was a totally normal 102/68 . . . praise Jesus!

Lastly, the tumor has shrunk back from the belly! Between my finding the tumor in the first week of June and Thomas starting chemo on July 2, his softball-size tumor was large enough that if Thomas lay on his back, one could see a bump slightly pushing out. It was so easily palpated by a layperson. Now, Chris and I cannot feel it. The doctor and nurses can still feel it because they are trained, but they are enthusiastically telling us that it is significantly softer and is smaller.

The chemotherapy and your prayers are working, folks!

Beads of Courage

Today Thomas was enrolled in the Beads of Courage program in which children with a serious illness are given a bead for every medical procedure. The beads "become a form of narrative medicine that will help make visible your story of strength and courage."

Thomas caught up on receiving all his beads today, which was a lot. In just one month, this little four-year-old has had:

• 10 "pokes" (blood draws, etc.), 
• 7 clinic visits, 
• 4 chemo infusions, 
• 4 overnights in the hospital, 
• 4 events under sedation or general anesthesia, 
• 3 scans of various types, 
• 3 tubes placed/removed, 
• 1 bone marrow aspirate and 1 open biopsy, 
• and 1 port placed.

Typically I have felt positive, but seeing that in black-and-white on Thomas's Beads of Courage record makes this mama pretty tearful. He's been through so much and this is only the beginning.

Lastly, a cancer charity gave Thomas a box of birthday gifts which he received at Clinic today: so thoughtful! He was given a handsewn pillow case, a big birthday sign, and a gift card to Amazon.

Specific prayer requests:
While the oncologist thinks that Thomas will need four rounds of chemotherapy before his tumor is operable, about 25% of kids with this tumor only need two rounds of chemo. Please pray that Tom can be one of the few who needs only two cycles!

Please also pray for Thomas to be spared from side effects from the chemotherapy, such as: hair loss (temporary); hearing loss; fertility; & heart function.