Chemo for February

Charly had another chemo visit this past Thursday.  I’m slacking about posting on the day of the doctor visit.

I would say it has not been a great month.  Since Charlotte’s increase in her chemo meds, she has had a couple major colds, some migraines that were so bad, she threw up, and an ear infection.  She has puked more this past couple months than she has during the entire 9-month “hard chemo” time.  She wakes up most mornings complaining of a sick stomach and sometimes she throws up. She wasn’t feeling well on the morning of her baptism.  I prodded her to eat some toast, and she got dressed and was baptized, even though I could tell she wasn’t 100%.  Last week, while she was on antibiotics for her ear infection, she didn’t want to eat anything.  Nothing tasted good.  Her stomach bothered her.  But she still went to school every day.  I am humbled by her perseverance in the face of adversity.  I also feel as low as dirt for encouraging her to go to school when she is feeling so crummy.  

I called the doctor’s office on February 6^th, a week before her scheduled monthly visit.   I just wanted to make sure that perhaps someone didn’t screw up on the chemo dosage and somehow miscalculated the math when they wrote the prescription.  I told the oncology nurse how much Charlotte had been nauseous and how she was losing her hair at an alarming rate.  The nurse spoke with the oncologist, and they suggested we give Charlotte Zofran for the nausea, and that chemo sometimes makes the kids lose hair…even while in maintenance.  So basically, keep going on.

Her hair started coming out in large handfuls a couple weeks ago.  Sean would leave a comb full of hair on the bathroom counter, and when I’d come home from work, I could see how much came out each day.  I’d pull the handful of hair off the comb and throw it out, feeling sick.  Sean said he left the full comb on the counter because he was in a hurry, not because he wanted to show me how much hair she was losing. Whatever the reason, it has been upsetting.  

Last Saturday, I put down an ultimatum that Charlotte needed to wash her hair.  She had been taking baths all week instead of showers, and I can’t tell if she entirely skipped washing her hair, or if she just didn’t rinse it properly after washing it. It was so dirty looking.  I was thinking the weight of the grease or dirt wasn’t helping with her hair loss.  I was pretty firm about it.  Either she would let me wash her hair, or she couldn’t go to the Lego movie with her dad.  She ran off crying.  I found her 15 minutes later on the stairs with giant crocodile tears running down her face.  “Charly, what’s this all about?  Why are you so upset?” 

“I’m afraid my hair will all fall out if I wash it, mom.” 

I cuddled her on the stairs and told her it would be alright, I would carefully wash her hair in the kitchen sink, but it needed to be washed.

Charlotte knelt on a kitchen chair, leaning over a towel placed over the rim of the kitchen sink for a cushion, and I washed her hair as gently as I could.  I still rinsed a lot of it down the drain.  Where the hair had been so thick, it had thinned so much over the past week that I could see her scalp in places.  Thoughts start going through my head – “What if the medication isn’t working?  What if the medication is killing her?  What if her hair never grows back?” We finished up, I gently towel dried and combed her hair, kissed her on her cheek and told her thank you for letting me wash her hair.  Then I went into my bathroom, locked the door, and sat on the floor and cried.

At her visit, the oncologist reminded me that everybody loses hair every day.  It’s normal. However, for cancer patients, since all their hair grows in at exactly the same time, it’s all on the same growth cycle.  The patients tend to lose larger quantities at the same time.  Also, chemo is essentially a poison.  Some kids will have higher hair loss as they continue taking chemo.  Basically, we are to suck it up and stop worrying because it’s not like they are going to stop chemo to save her hair.  (They didn’t say that.  They are very nice and sympathetic, but in cancer treatment the only option is to continue moving forward, no pause or stop.)

Charly’s ANC counts were still higher than they want them to be during maintenance.  Last month, they were 4000 – but she was just getting over a virus, so they attributed her high counts to her body fighting off the infection.  This month, the ANC levels were 1900.  They want her between 950-1400.  Normally, after 2 months being high, they would increase her chemo again.  However, given the problems of the past two months, they decided to wait for one more month before increasing her dosage.  If she is high again next month, they will definitely increase her dosage. 

They also warned me that they were prepared to increase her meds up to 150%.  Last month, Dr. Maese mentioned she was at 80%.  (Percentage of what, I’m not sure.  I will put that on my list of questions for next time.)  But based on those percentages, I guess they are prepared to have her take as much as double the amount of chemo she is taking now to achieve the blood results they are looking for.

Yuck. “Just get us through the cold season and into spring!” was all I said.

Dr. Barnett said that even though we were warned to give her chemo on an empty stomach, if her nausea persists, we could give her half a granola bar to take with her meds at night.  As long as whatever we give her with her meds is not milk-based.  We also have been taking advantage of the Zofran prescription that helps prevent nausea.  Charly only has taken this medicine twice for nausea during the first 18-months of her treatment, but she’s had about 6 doses of the medication in the last few weeks.  It just goes to show how miserable she must be feeling.

On a brighter side… The last couple days, it seems her hair loss is now a lot less.  Only a few strands come out when I comb her hair.  She also hasn’t complained of nausea as much, and hasn’t thrown up for a week.  I do wonder if it’s the antibiotics that she was taking that caused the stomachaches – not completely unheard of.  They asked if any of our family had been sick in the last month, and we have not.  She could have caught a mild stomach bug at school.  It’s all guess work. I’m just praying that we see better results next month.