Maintenance Day 495: When It Rains…

Do you ever have those days where you just want to go back to bed and cover your head and pretend it didn’t happen? That’s what today was. Except really, it’s just another day in our house.

Background: Scarlett gets a medication called methotrexate (MTX). She gets it once a week on Tuesday night after dinner. It is common for her to wake up on Thursday morning and throw up. We finally connected the two events several months ago. We try to premedicate her with Zofran (for nausea) Wednesday night. Sometimes that works. Scarlett had been due for a dose increase of her MTX for a while and this was the month that Dr. B decided to give it a try. So her dose increased from 0.5 mL to 0.7 mL. We gave her the new dose on Tuesday, August 2.

By Wednesday morning, Scarlett was complaining of a belly ache. We started giving her Zofran right away and continued nearly around the clock. It didn’t go away. She threw up a couple times over the past two weeks. But it doesn’t seem to be nausea causing the “belly ache”.

We tried to supplement her diet with a Pediasure shake at night thinking she was hungry and it was hunger pain causing the belly ache. The food didn’t help.

We questioned whether she was constipated. Scarlett, being the self-sufficient and independent little lady that she is, goes potty by herself. She doesn’t tell us and we don’t ask. So last Thursday I gave her a dose of Miralax. And the floodgates opened! She started having diarrhea after that. All weekend. It got to the point last night that we knew we had to bring her in.

She was in a really good mood. We took her weight and went in the treatment room. That’s when she got the bad news: she was going to get accessed. She needed labs to check her liver panel, her Hgb, ANC, white count, potassium and sodium…She also got a strep test. Since Tate and Evangeline had strep last month, they questioned whether Scarlett had an undiagnosed case. In preschoolers, strep can manifest as abdominal pain instead of throat pain.

Her labs all came back great. White count was high but not unexpected for either a post- steroid level or an infection. Her liver panel came back improved over last month. Her rapid strep came back negative. Unfortunately, her weight went down from 16.3 kg to 14.7 kg which is about 4.5 pounds. That’s a lot of weight for a little one to lose in two weeks. She got some fluids and made a craft while we waited.

We ruled out strep. That leaves two possible options: a bad reaction to the dose increase of MTX or an intestinal infection. For the time being, we will decrease her MTX back to 0.5 mL and see if that helps. In the meantime, we need to spend the night working on getting a stool sample. Yuck. She will be tested for C. diff, rotavirus, and giardia. Hopefully we will have an answer.

We also discussed her feet again. They are now so dry that they have cracked open. Deep and painful cracks that make her cry when she walks. We will now try a very moisturizing ointment until the cracks heal. Which will probably make her infection worse.

When Brock got home, Tate was waiting for him with a 102 fever. Oh yeah, and last Friday, Brock got rear ended in the van. And my mom has shingles. And was with Scarlett before she knew. I swear, the luck doesn’t stop. Maybe we will win the lottery tonight.

In the meantime, we worry. We worry about the stomach pain being cancer. We worry about her leg pain being cancer. We worry that her white cell count is cancer. We worry, worry, worry. It never ends. We never get a day off. Brock and I haven’t slept in four years. I’m not sure we ever will at this point. Every day seems to crap on us a little more. Only this time, we are dealing with literal crap.