Maintenance Day 84: Cycle 2

Today is the start of Scarlett’s second maintenance cycle. She will repeat the same 84 day cycle. We are scheduled for a lumbar puncture this morning with three chemotherapy medications injected into her spine followed by an IV chemo.

Last night we let her choose what she wanted for dinner since she has to go at least 18 hours without eating. She chose ham. A little surprising but whatever. She then proceeded to be disgusted by ham and didn’t eat supper. Which makes for a long day today. Ugh, three year olds! So this morning, Brock and I were watching her closely and told her over and over that she couldn’t eat. We let her out of our sight for 30 seconds and she comes in holding a PopTart. After we both yelled “no!” and dove to get it away from her, she began crying and the chewed up PopTart mostly fell out of her mouth (onto my shirt – I felt like I had a newborn again). Luckily for us, she doesn’t get fully sedated for her LP. So we have to wait an extra hour for her stomach to empty but we would rather be safe than sorry.

With Scarlett being so smart, these appointments are getting harder and harder. About halfway to the hospital she begins to ask questions. “Am I getting a poke today?” “Do I have to have a butterfly?” “I don’t want a big sticker!” For some unknown reason, she refuses to use Emla. Emla is a cream that is given to patients that numbs the area. It is applied about 30-60 minutes before her appointment (so right as we leave the house) and by the time we get there, her “button” should be numb. Scarlett hates it. She would rather feel the poke. I asked today if they had ever seen that. Nope, her doctor said, that’s just Scarlett. To get accessed, we must be sterile. Scarlett sits on our lap and we both wear masks. We lean back and hold her head up and right arm away. A needle (“butterfly”) is poked into her port (“button”). The port has a metal back so that the needle can only go so far. Gauze pads are placed under the butterfly wings as padding and tape strips (“spider legs”) are added. The tube (“tubie”) is wrapped around so that if it gets pulled, it will just unwrap instead of pull out. Then a piece of sticky dressing is placed over all of that to keep it sterile. That dressing is the part that she hates the most. She hates for it to go on (I think that is because the whole area around her port is sensitive) and she hates it even more when it comes off. She has always had very sensitive skin and the area where the dressing was applied usually is red and inflamed for a few days after it comes off. The past few months, she has been quick to remind us not to pull her tubies. Every time we pick her up she says “don’t pull the tubies!”. She is always so afraid of what is to come. This is pretty common in kids with cancer.

Scarlett does not get full sedation for her LP. She gets a drug called Versed and morphine. The Versed is given first. Her eyes get glossy and she starts to sway a little bit. She always refuses to lay down until she gets the morphine and then she lets us lay her down. It’s like watching her get high. She turns her head very slowly and gives you this look like “what is going on?!?”. She is then put into position, on her side with her knees tucked into her chest. The Child Life department usually brings in a movie or light up toys to keep her distracted. They begin by cleaning her back and making everything sterile. Scarlett kind of stares off into the movie while the doctor inserts a small needle into her spine. The first needle is lidocaine to numb her even more. After that, a bigger needle is inserted between her vertebrae. The syringe is removed and a tube is placed below the end of the needle to collect the spinal fluid that slowly drips out. They collect two vials of fluid for testing and then remove another vial to equal the amount of chemo that they will put back in. The chemo meds are injected directly into this same needle that is still in her back. Finally, the needle is removed. The whole procedure takes about 15-20 minutes, which is just about how much time it takes for the Versed to wear off. It’s funny how, just when they finish, she kind of comes to again. During the procedure, I stand by and am amazed at how brave and strong she is. Most kids are fully sedated for LPs. But Scarlett isn’t most kids.

She then must be monitored for half an hour and then gets her IV chemo. And then she can eat! Today, she also got a birthday present from Child Life. Her own Doc McStuffins doctor kit. She’s pretty good at giving check ups.

Finally tonight we start our five day pulse of prednisone. I would say that Scarlett started getting the mood side effects before she took the first pill. She also ate two lunches and one dinner in a five hour span. She also cried for 20 minutes because someone looked at her (or something similar – sometimes it’s hard to tell through the sobs).

And this is day one of every cycle for the next 17 months. Just a normal day in the Tafelski house!