Our first clinic day was yesterday. Liv was having a procedure under anesthesia, so she had to be fasting. This was so brutal because her steroid hunger had finally kicked in the day before and she was actually eating again! Not only was she eating, but she was eating A TON! She was hungry all day. So, the fact that she had to fast on top of being legitimately starving, made a tough day even worse.
It was hard to go back, for all of us. As we got closer to the hospital I started getting really anxious, and I could tell Liv was feeling the same way. Almost immediately after entering the hospital, Liv got really sad and whiny and withdrawn. When we walked into the clinic and the first nurse came over to talk to us, Liv buried her head in my legs and wouldn’t answer any of the nurse’s questions.
The first thing they had to do was access the port. Her port is inside her body, she just has a little bulge above her heart where the port is. Each time before we head into the clinic we will rub a lidocaine cream on the skin above her port. By the time we get to the hospital, the skin is numb enough that they don’t really feel the needle going into the port. Since this was our first time, I was anxious to see how it would go for Liv. Before they even pulled out the needle, she was losing it. She was crying and screaming and didn’t want them to come near her. I had her sitting on my lap and I had to hold her arms down. She fought the whole time but when the nurse poked the needle into the port, Liv didn’t make any extra noises or jump at all, so I don’t think she felt it. Wahoo! Once it was in, they drew a few vials of blood to run some lab tests.
We were waiting for the doctor to come in and see us and Liv couldn’t top talking about how hungry she was. She started to cry and said she needed food. We asked her what she wanted to eat after our appointments and she said “Chick Fil A!” She said, “I want nuggets, and fruit, and fries, and ice cream and a drink!” Haha!
The doctor finally came in and started discussing her current status with us. We got some great news back from some genetic tests they ran on her blood last week. She has a translocation in her genes. I don’t fully understand what it means, but he said 25% of patients have this and that it is a good prognosis. It automatically put her in the average risk zone (92-95% cure rate). We have some other tests that are supposed to come back on Tuesday or Wednesday, and if these are in a certain range she will be in the low risk zone (95-98% cure rate). This was very encouraging to me! We talked for quite a while about all that she is able to do right now, etc. The whole time we were talking, Liv kept whispering in my ear “CHICK FIL A!!!” Ha!
After meeting with the doctor we went to get her chemo. There is a big room with a bunch of chairs where you kind of just hook in. Liv got really whiny when we walked in there. By whiny I mean she just does this weird whine over and over again. She doesn’t really talk, and if you try to get an answer out of her, she just grunts at you. While we were waiting, there was a little craft table set up. They were making gold glitter playdoh for St. Patrick’s Day. There was a little bald girl over there playing and I asked Liv if she wanted to make some. She nodded yes, so I walked over with her. The girl tried to talk to Livvi, but Liv wouldn’t answer her 😦 It made me so sad to see her so withdrawn. She played with the playdoh for a while and then they came over to do her chemo. Liv started screaming again and the girl looked at her like, “What’s the big deal!?” Haha. Luckily the chemo this month is just a “push”, they just push it through her line. It took like 20 seconds. Some chemo’s will be a drip into her line and last a few hours.
Once that was done, we headed down to the Operating Room for her Lumbar Puncture. Normally, we will do these in the RTU, which is just a smaller room for procedures. But the RTU was booked, so we had to do it in the OR. The OR has a lot more we have to go through. We have to scrub her down, change her into a hospital gown, and we can’t go back there with her as she falls asleep. All of this made her even more emotional, and she started scream-crying. I swear the whole hospital heard her. She had just done all of this last week before she had her surgery to have her port placed, and she remembered all of it. She was not happy that we were doing this again! The anesthesiologist was so nice. He came in and saw how upset she was, and he made a special exception and said we could come back with her until she fell asleep. He also told her that they would have a snack for her when she woke up. This made her perk up a bit and she said “I want cheetos!” She had had cheetos when she woke up in the RTU last week after her bone marrow biopsy and she wanted them again 🙂 So he walked us back to a little bed that was right outside the operating room. We laid her down, kicking and screaming, and started singing “Twinkle, Twinkle Little Star” to her. They put the anesthesia into her port and within 5 seconds, she was out! We went to the waiting room until the procedure was over.
They came to get us when she started waking up. We went back there and said, “Hi Liv!” She looked back at us with the biggest glare 😦 She was not happy that she had to do that again. She was really quiet but when the nurse asked if she wanted a snack she said “Yeah! Cheetos!” The nurse told her that they didn’t have any and she started to cry. Apparently they don’t have Cheetos in the OR, just the RTU. She was ticked! They kept trying to offer her other food and she refused. She wouldn’t drink anything either. She is so stubborn! They didn’t have what she wanted so she wasn’t going to give anyone the satisfaction of getting her something else. Haha!
Once we finally were free to go, Rick carried her down to the cafeteria while I filled a prescription. Rick said he walked in the cafeteria and said “I don’t know if they have Cheetos, Liv.” He kept looking around and then finally found some. He goes, “Oh look! Cheetos!” He said Liv started in a low voice and gradually got louder and louder saying, “Yes! Yes! Yes! YES!” Hahaha!
Rick came back with Liv and the Cheetos and I FINALLY saw a smile on my girls face for the first time that day 🙂
We left the hospital and drove straight to Chick Fil A. She had a HUGE meal, and couldn’t have been happier 🙂 We got home around 3pm and she was so happy the rest of the day! I was very encouraged. I was worried that we were starting over again. That she would be withdrawn and depressed again for a few days, finally start warming up, and then it would be time for clinic again and we would start over. It was nice to see that her sadness was just a reaction to the hospital and she could go back to being happy when she got home. I hope that it will become more normal for her; although, I HATE that it is her new normal 😦