Day 36 at St Jude

Today Jesse had labs to see where her counts are at. First they draw the blood needed to test at Triage. The nurse kept trying to get Jesse to talk with her, but Jesse wasn’t interested. She took her blood pressure, and since Jesse was not happy, it was a little high.

Then she took her temperature: 37.1 Celsius. I asked her for the Fahrenheit, she tapped the button and on her machine it gave 100.1. To double check she took the temperature again, 37.1 Celsius. I swear to you that is what she said… and this sentence will make more sense in a few. (37.1 Celsius is actually 98.78 Fahrenheit)

She also asked us where we were from and commented how lucky we are to have missed the snow. I’d love to be shoveling the driveway… sledding down the little hill… fighting with all the wet clothes from having to do laundry. But I guess my perspective is different.

Jesse didn’t feel that warm to me, but I was a little concerned. Our next stop on the schedule was D clinic for follow up at 9:45am. Since we had time, Jesse and I went to the cafeteria. Her weight is 15.2kg (33.5lbs). Jesse felt like eating, and I wanted to take advantage of that. I don’t want her to end up on TPN.

When we walked back to D clinic to let them know we are here, they were still closed. I walked up to patient registration to find out if we should go to the medicine room. And we should have. We registered and began to wait for them to be ready for us.

About an hour into waiting, Jesse had to pee. The one bathroom in the waiting room was occupied. So we went into the bathroom in the hallway. This one had two stalls. Jesse went into the first available stall. Immediately she got it in her head that woman had stunk up the space… and with that it was over. Threw up in her mask, down her shirt, onto her skirt. Too top it off, I stupidly forgot to pack a change of clothes. Must be ready for that next time.

I found a nurse to get her a new mask and cleaned her up the best I could. My frustration level at not being seen, Jesse throwing up, and me not packing a change of clothes got the better of me.

About 30 minutes later, they called us into A clinic over the intercom. I had asked for them to call my cell phone… maybe reception in that space isn’t good. There they stuck us into a room with no mention of Jesse’s counts.

Finally a nurse came in. I asked her when we’d be seen. Jesse was telling me that she was tired and hungry. I felt that I needed to get her out of there to catch a nap and to feed her. I could be wrong. I did show my butt in telling the nurse I was frustrated. She explained the doctor was busy with two other very sick kids. I really do hope they are okay, and I understand they take precedent. However, Jesse didn’t need anything. The nurse could have easily said to us: “Here are her counts. Her ANC is 0. Be careful in public spaces. If she runs a fever, you know what to do? Her red blood and platelets are good. If she acts like that has fallen, just come over and they’ll draw her levels to check. Have a great day.”

But nope I had to see the doctor… who basically told me just that. I understand there are first time parents who need that. And it’s important for them to have that, but I can save them time (and yes her time out of there. She needs it because she refused to speak to anyone there today). I am not going to do something stupid to harm Jesse in anyway. Plus I have unfortunately done this before. I am sure they put a sticky note on Jesse’s file today: “Mom is a a double s.” I wish they would put sticky note on there stating something to the effect that we’ve done this before.

And he was a staff oncologist… so I did a pretty good job of showing my butt to him too. I brought up with him the temperature. He’s reply was that 37.1 was a little over 98.6 Fahrenheit. And I guess as a way to get back at me for stating I was frustrated because I’m sure he was too that maybe one of us had misunderstood.

I could give every excuse in the world, but I shouldn’t act like I did today not matter what. I should have stuffed it down better. I shouldn’t tell them I am frustrated. And we are lucky, Jesse seems to be responding to the treatment. For some reason I have felt angrier this round… I guess the first round I was petrified because of how much pain Jesse was in. Or maybe I haven’t really dealt with this healthily. I’ll figure it out… and maybe my frustration today was not being prepared for throw ups like I should be. Plus I get so tired of being treated like a first timer (and that is bad too because I could mess up and miss something really important that is new from the first time we did this.)

Jesse and I left around 11:50am. Luckily she was still hungry. We returned to RMH, changed her clothes, and headed for West Memphis Kroger. There I got her stuff to make Nutella smoothies and English toast pizzas.

Back at RMH, she choose the Nutella smoothie for lunch and drank almost all of it.

I actually made myself workout this afternoon, and I think that has helped. Tomorrow, I’m going to set her up with her Ipad in the fitness room (hopefully) and maybe run. I really don’t think that will happen. I’ll get to run again when Jesse is better.

Jesse wanted to call her dad several times today. She is having a really hard time with the separation.

Around 5pm, Jesse wanted an English Toast pizza. Not sure if that or the banana got her. At 5:38pm, I gave her Bendryl. She held it all down until about 7pm. Then we lost the battle. It came up with a vengeance everywhere.

As I was taking out the trash, I got the chance to meet a weekend manager for RMH. He and his wife visit frequently, and help with fundraising for St Jude in Virginia! Plus they visit RMH at Christmas to help run the house. Really nice of them to make the over 900 mile trip to help the families here and to do it more than one time a year. And it was really wonderful to run into someone from Va Beach 🙂 If you see any fundraising activities for St Jude in our area or your area, please do help. It is really nice what they do to help families here. We won’t have to pay for the care Jesse has received. RMH doesn’t charge us to stay either.

RMH does call at 9pm and ask how your stay is going. The paranoid side of me wanted to ask if someone was complaining about me or if I was being too loud or if my jump jacks disturbed the people below?

I do feel better now that I have ranted and guilty because Jesse is lucky. She is responding to treatment. The prayers are helping. I guess it comes down to just being exhausted and frustrated about what is going on. Plus missing Mike, Chris, our friends, home, and my cox internet (it’s the nerd in me… I have been spoiled by my internet… so very shallow). Jesse missing out on all the things she should be doing: going to school, playing in the snow, having the occasional virus as if it were no big deal.

For everyone back in VA, if you get snow, enjoy it please 🙂