A Charly Update

Jan 16, 2014

Today's clinic visit started off well - No snow for the drive up to the hospital!  That always makes for a better visit.  The docs came in and checked Charlotte over for signs that she has recovered nicely from her latest bug.

Last Tuesday evening, Charly started running a fever around 7pm, and when she hit the magic 1-hour mark of running a fever over 100.4, I called the oncologist on call and was directed to drive up to the ER at Primary Children's so they could check Charlotte out.  I texted Sean, who isn't allowed his cell phone while at work, that we would be going to the ER because Charly had a fever.  By the time he finished his shift a little before 9, we were pulling into the ER parking lot.

I find myself explaining to people - it's not an emergency, it's just nobody works at the oncology clinic after 4pm, so we have to go to the ER... just to make sure she isn't having some sort of bacterial infection.

Charly and I got to Primary's by 9pm, and didn't leave almost 2am. Needless to say, I emailed work and said I was NOT coming in the next day (that day).  I honestly felt they could have let us go by 11pm, but they decided they wanted to do a chest x-ray, and they wanted to do a nasal swab to see what virus she had, and even though we called ahead, the nurses and doctors were busy elsewhere for a while.  We were given the IV antibiotics, and they took a blood sample to test and see if she was having something bacterial going on.  Charly's port was not very cooperative, it took the nurse about 15 minutes to get her blood sample.

Honestly, by about midnight, I think they forgot we were there.  When the resident left us at 11:30, she told us they were waiting for a radiologist to look at the x-rays and then we could go, they would call us with the results from the virus swab the next morning.  There was a shift change, and the new resident felt that we could just hang out until the results came through.

Anyhow...that's seems to be what happens when Charly catches a virus.  It's not because it's necessarily an emergency that we have to go to the emergency room, it's just that they take infection risk seriously, and the ER is where you go when it's after-hours.  I asked Dr. Maese today if at any point we'd not jump to take her in with a fever, how bad would it be to wait and go in the morning to the clinic. (I had one cancer mom tell me at the Christmas party that they fudged bringing their child up a few times, because "honestly, it's impossible to just drop everything when I know it's just a bug."  Sitting in the ER as it approached midnight, those words echoed in my head.)  Dr. Maese just shook his head and said, "We just want you to come in right away.  It's pretty important."

The nurse came in to take Charly's blood to check her levels.  Her normally cooperative port refused to let any blood out.  I guess I should have predicted this from the ER nurse's difficulty pulling a blood sample the week before.  This happens occasionally to ports.  The nurses ask the patient to raise an arm above their head, then both arms, then to sit up straight, then to poke their chest out... None of these tricks helped.  So they ordered TPH from the pharmacy.  They inject TPH into the port and let it sit in her port for a half-hour.  After the half-hour, the port works great.  The TPH causes any blood clots to disolve.  It takes about a half-hour for the TPH to arrive from the pharmacy, so the port challenges added another 90 minutes to our visit today.

When her port was finally cleared, they pulled her blood sample and pushed her chemo, Vincristine.  We were out by noon.  I told Charlotte she could pick where we went for lunch, and she selected Olive Garden.  She wanted soup.  I was hoping for a drive-through, but promises are promises.  We went to the Olive Garden and enjoyed unlimited soup, salad, and breadsticks.  Charly finished 5 breadsticks and a bowl of soup.

After lunch, we went and got a trim.  Charlotte's hair is growing back great, but it's pretty messy.  I'm sure most people couldn't tell we did much with her hair, but the goal is to keep as much of the length we can.  I just wanted it a little more tidy for her 8-year old pictures.

One more development that we finally have discovered the answer to...Charly started getting a rash on her cheek 3 months ago. It would go away when she was on steriods, then it would be back - pimply and red.  It spread to her chin, underneath her lip, and over the bridge of her nose to the other side.  I kept pointing it out to the oncologists, and they said it wasn't something they were very concerned with.  One suggested that if Charlotte tried itching it, to put some cortisone on it.

The rash was still worrying me, and cortisone didn't appear to help long-term, so before the year ended, I made an appointment with a dermatologist.  The dermatologist immediately diagnosed it as steroid dermatitis.  Said it was textbook symptoms.  What does that mean?  The stupid steroids cause the rash.  It takes 3 weeks off steroids for the rash to clear up.  Since she's going to be on steroids every month for the next year, she's going to have a recurring rash every month.  If you see it, don't worry, it's not catching.  The dermatologist told me to NOT put cortisone on it (it's a steroid, and just makes it worse).  He prescribed an "emollient" that we could put on the rash.  The creme has helped a lot, and now I have one more reason to hate the stupid steroids.

All in all, it's going great.