This week has been pretty tough. We started our new round of treatment and Liv has been adjusting to her new drugs and the way it makes her body feel. The rest of us have been adjusting to the new ways that Liv has been acting. Haha!
Our new schedule for medicine is just one 6MP chemo pill each day. It has to be taken on an empty stomach, however, so it is kind of tricky. I think we finally found a good schedule for our family. She can’t have anything to eat for two hours before she takes her pill, and then nothing for one hour after she takes it. So, we usually have a snack at 1:45pm, give her her pill at 4pm, and then we eat any time after 5pm. She is so great at swallowing pills! It is a pretty good size pill. I mean, its not huge, but its not tiny either. We are allowed to give it to her with a tiny little bite of applesauce, and she just swallows it right down. I’m so grateful that this isn’t a huge fight every time!
The first day after clinic (Friday) she was really happy. We played outside in our backyard quite a bit and she loved it. She and Street also wanted to help me clean the house that day. What is it when you ask them to clean, they put up a fight, but if you don’t ask they beg you to do it?! Haha. She was really happy that day and smiled a lot! She slept fine that night too.
She also got an amazing present in the mail that day. We have a friend from our old ward in Chicago that works for the Chicago Bulls. He sent her an official jersey with “livstrong” on the back and an official game ball with all the players signatures!! Seriously an incredible gift, and we were beyond grateful! She looks adorable in the jersey!
The next day we went to the Tulip Festival with my mom and my sister in law and her two girls. We had a blast and the weather was amazing! It was so fun to get Liv out in the fresh air while her numbers are good enough to do things.
After that, she started having some rough days. At first she cried of headaches and was in quite a bit of pain. I felt so bad for her. I have suffered from headaches since I was in the 5th grade and I hate it when my kids have one. It is so sad! Those two days she laid on the couch a lot and was really sad and quiet. She would turn away from all of us and face the back of the couch. She also would put her headphones on and listen to her Taylor Swift a lot too. She complained of a stomach ache quite often as well. She was really moody, and whined a lot. She woke up twice in the middle of the night.
After that it all went downhill. She started acting like she did on steroids. Moody, whiny, angry, sad, irrational, unresponsive, and waking up a bunch at night saying her stomach hurt. The only thing that was different was that she didn’t want food anymore. She started pulling faces, like it was gross, when she would eat something that she normally loves. The first day that happened, she just kinda pushed through the taste and finished it. That day I gave her her medicine on a regular metal spoon and she pulled a super grossed out face again.
The next day, she woke up really hungry and asked for cereal, took one bite, pushed it away, and said she didn’t want it. She got down from the table and didn’t ask for one more thing to eat. I thought it was really weird. Anyone that knows Liv, knows that she has ALWAYS loved her food 😉 She has always had a very healthy appetite and wants food round the clock 🙂 And then of course, she has spent the last six weeks on steroids, and dealing with the after affects of steroids, and gorging on food because she is so hungry. That night we went to Yia Yia and Papou’s house for a dinner. Liv was pretty sad and moody but you could tell she was happy to see her grandparents, even though she didn’t show it much. She tried to eat the yummy dinner, but nothing tasted good 😦 It took her about two hours to warm up to everyone, and then she finally was talking a smiling a bit. She drove the Elsa car with her cousins and Papou took her on a tractor ride. When it was time to go she started crying and didn’t want to leave
Monday was a really hard day. She cried all day of her stomach hurting. I would ask her if she was hungry and she would emphatically shake her head “no”. She hardly ate anything all day so I knew she was hungry, she just didn’t want food. I think for her it is hard to understand. Her whole life, when she was hungry, she wanted food. Now she doesn’t want food, so when she feels hunger pains, she doesn’t equate it with being hungry. I tried giving her pretty much everything in the house to try and see if it tasted good. All of her favorite foods (cheese, cottage cheese, chicken nuggets, peanut butter, chips, pretzels, etc), and nothing tasted good. She just got more and more cranky and moody as the day went on. I’m sure it was pretty depressing for her to not want any of her normal foods, food has always made her really happy.
That night was horrible! She woke up at 11:45pm, came in my room and was whimpering, I asked her what was wrong and she wouldn’t respond. She just kept whimpering and covering her face. I asked her if something was hurting, she shook her head “yes”. I asked her what was hurting, she pointed to her stomach. I asked if she was hungry, she shook her head “yes”. I told her she could still eat for 15 more minutes, and then she couldn’t have anything else because she had to fast after midnight for her lumbar puncture the next day. I asked what she wanted to eat, she wouldn’t answer. “Cereal? ” I asked. That was what she always wanted in the middle of the night on steroids. She shook her head “yes”. I took her downstairs and poured her some cereal. She took one bite, pushed it away and walked back up the stairs. I asked her if she was done and she sadly shook her head “yes”. She went back in her room and I went back to bed.
Five minutes later she was crying in her room again. I went in to check on her and she started wailing. She wouldn’t respond to anything that I said and she just kept getting louder and louder. She shares a room with Street, and Daci and Stade are just two doors over, so we had to go downstairs with her so she wouldn’t wake them up. She screamed bloody murder for over an hour straight. It was like she was having a night terror, but was fully awake. She was in a rage. She did this quite a bit when she was on steroids, so we had seen it before, but it was really frustrating to see her do it when we knew the drugs weren’t affecting her anymore. Rick and I tried to talk and reason with her. We tried to ask what she was feeling, we asked if she was hurting, we asked if she was sad, we asked if she was mad, we asked if she felt sick. She didn’t say one word, or even give us any head shakes. She just sat there with her eyes closed, screaming at the top of her lungs. After a little while she started dry heaving because she was crying so hard. Finally I wrapped my arms around her tight and put my lips right next to her ears and started doing the “Shhhhh” sound you do to a colicky baby (thank you, Street! 😉 ). At first I was shushing really loudly so she could hear, but then her screams came down a decibel! So I shushed a little quieter, and her screams came down even lower. Yay! Finally her body kind of went limp in my arms and she was down to a quiet sob. I held her for another minute and then quietly said to her, “Liv, we want to help you, but there is no way for us to help you if you don’t tell us what is going on. If you just sit and scream and don’t answer our questions, we don’t know what is upsetting you and we can’t help you. Okay?” She shook her head, “yes”. I said, “What’s wrong? Does your tummy hurt?” She shook her head, “yes”. “Do you want a drink of water, sprite or apple juice?” (thats all she can have after midnight the day before her lumbar puncture). She shook her head “no”. Do you want to go back to sleep? She shook her head “yes”. She had completely worn herself out. I walked her back up to her room, tucked her in and we went back to bed. She whimpered and whined in her room for about 15 minutes and then fell asleep.
The next morning we got up and got ready to head into clinic. Liv was really sad and moody all morning. I had to put her emla cream on her port right before we left and that set her off. She started screaming and wailing. I put her in the office and told her when she was done screaming, she could come out. It breaks my heart to do that, I mean she has cancer for heavens sake! But, theres also a point where I have to be firm in her behavior. She can’t act this way for 2.5 years and expect it to be ok. My mom got there about five minutes after she started screaming and said you could hear her outside, across the street. My mom snuggled her on the couch while I finished getting things ready for the other kids before I left for the day. I was glad she could have someone be patient and loving with her, because Rick and I were kind of at the end of our rope at that point.
We headed to clinic and she was sad the whole drive there. Since her cheeks got so chubby on the steroids, her face holds a really good frown. Sometimes its going to have permanent frown lines because she does it so often. Haha. Between the night and morning we had had, I knew it was going to be a super awesome clinic day.
She was sad and withdrawn during vitals, freaked out screaming during port access, and refused to answer any of the nurses, or doctor. The child life specialist came in with the magic snow she played with last week, and she did play with that for a while, but would’t talk to her. Then, we had a girl come in that is with a research team that is doing a study on the genetics of leukemia. They asked if we would give our blood and then they would use some of Liv’s and map our genetics. Liv perked up a bit when we told her that Dad and I were going to get pokes this time and do a blood draw 🙂 Anyone who knows Rick knows that doing a blood draw is the ultimate show of love. Haha! Poor guy is the squeaky-ish person I know. He is a real visceral reaction when he gets a blood draw. He has passed out his whole life. I witnessed it once, and it was the most terrifying things I have ever witnessed. The last three he has done, he hasn’t completely passed out, but thats because he lays down for them. Haha! So anyway, Rick laid down and the nurse started drawing blood. Liv watched really intently. Then it was my turn. I tried to have her get off my lap and sit next to me but she refused. She never wants to get off my lap at the hospital. So, she sat on my lap and the nurse let her be her helper during my blood draw. Liv handed her the vials and helped wrap up my arm. She really liked that 🙂
After that, they sent us down to the CPC for her LP. She was pretty happy in the pre-procedure room again. For some reason she always perks up in there. Then they came and got us and both Rick and I got to go down this time. I sat her up on the table and immediately she started crying. I held her tight as they put the propofol in her port and she was out in about two seconds. I laid her gently back and we went to go find her something to eat while we waited for her to be done. I walked through the cafeteria and grabbed a few random things: fruit snacks (she had been begging me for fruit snacks the day before but we didn’t have any), mandarin oranges, and chocolate milk. Haha. Hopefully one of them would taste good to her! We went back to get her and she had already requested an orange slushy from the nurse. I showed her what I got and she wanted the fruit snacks. So she laid in her bed and had orange slushy and fruit snacks 🙂
On a normal day, we usually get to go home right after LP, but today we had to go up for our first dose of the pentamidine. Darn! I really wish she weren’t allergic to the Septra! (see previous post for full Septra details 😉 ). She was NOT happy that we weren’t done for the day! We went back to the infusion room, and got settled in. She wasn’t responding or talking. She would give me an occasional head nod. I figured out that she wanted her headphones and to listen to Taylor.
The pentamidine has to be administered over an hour, otherwise it causes very severe reactions, like not being able to breathe, etc. About five minutes into it, Liv started whining. I asked what was wrong, did something hurt? Was something bugging her? They wanted to know anything out of the ordinary while it was being administered because it could be an allergic reaction. After about a minute of her whining and me asking, she went into full beast mode. Rick and I call it her Incredible Hulk mode. I mean like, really, there is no other way to describe it. She just starts screaming and thrashing and turns bright red. Nurses started running from all over the room to us, they shut down the drip immediately. They tried asking Liv what was wrong, and she just screamed harder. They asked us what was wrong, and we just shrugged our shoulders in frustration. We told them that she does this a lot at home, that it isn’t anything new or weird from the medicine. Her screaming was getting crazy and the other kids in the room were getting scared so they drew the curtains around us. After five more minutes they had us move entirely to a room where we could shut the door. It was pretty much awful. The one nurse, who I love, was so shocked by what was happening. She paged the doctor right away so he could see the way she was acting and maybe give some insight. The nurse turned out the light and left the room for a minute. I pulled Liv into my lap like a little baby, wrapped a blanket around her, and started singing to her and rubbing her head, half way through the first song she was at about half strength with her screams. I started another song and about two lines in she suddenly went limp and silent like a rag doll. She was completely asleep! She had worn herself out! Then nurse came running in and was all worried that it was quiet now. Haha! She started the medicine drip again and told us to watch for signs of allergic reaction. She said she also paged the child psychologist. She thought it might be good to have a conversation with him about what we could do with her at home with her behavior. It was funny, because we had described all of this to them during our clinic appointment, but until they could actually see it, they had no comprehension of how bad it is. Of course, once the doctor got there, she was already asleep, so the nurse tried to explain it to him.
He left again and we continued talking to the psychologist. He told us that a lot of kids that have cancer kind of regress 2-3 years. So Liv is acting like a two year old throwing a tantrum right now, she’s just a lot bigger and a lot stronger now. He suggested we do what we would do with a two year old when they throw a tantrum. Kindly tell them that we want to help, but can’t when they are behaving that way, and then walk away and leave them there. He said with Liv, we should just do the same thing. Tell her that we can’t help her if we don’t know what is wrong with her and that when she’s done screaming and wants to talk to us that we would love to listen to her, and then just walk away. About 30 minutes into our conversation, Liv woke up and started screaming again and wouldn’t respond to our questions. He suggested we all get up and walk out of the room. We went into the hall and Liv went crazy. She screamed for about 20 minutes while we finished our conversation in the hall. The nurse kept going in to make sure her vitals were all fine, etc. She also paged the doctor again and he came to observe. I finally went back in and started asking her questions. “Is something hurting?” She shook her head “yes”. FINALLY some responses! Apparently that technique works. She pointed to her stomach. “Does your tummy hurt?” She shook her head “yes”. I asked if she was hungry. She shook her head “no”. The doctor decided he wanted to have her sent down for an x-ray of her stomach to make sure she wasn’t constipated or full of gas.
We headed down to the imaging center and they got her right back, took the x-ray, and we went back up to clinic. On the way back up to clinic, we had a really sweet experience. There was a boy that was about 14 years old in a wheel chair in the elevator with us. He looked at Liv and cheerfully said, “Hi!” Liv didn’t respond and covered her face with her blanket. Rick said, “Sorry, she’s kind of shy.” And the kid looked at us and said, “It’s ok, I was too at her age.” Then he looked right back at Liv and said, “You’re so pretty!” and then the elevator dinged, and he said, “Bye!” and wheeled on out at his floor. The tears welled up in my eyes and I looked over at Rick and he had tears in his eyes too. It was the only about 15 seconds but it totally touched us. I can’t imagine being 14 years old, and having gone through all that that kid already has in this life. He was more compassionate and sweet and understanding than most people are as adults. I was so grateful for him and felt so touched by him. I pray that Liv can come out of this like that. I know this road is beyond hard and discouraging, but she will grow so much and be such an incredible person from it.
We got back in the clinic and the doctor looked at the x-rays and she looked great so he knew there was nothing serious to worry about and we were free to head home. Finally! Of course Liv immediately got a big smile on her face and practically skipped out of there. The nurses were all laughing about it. Yeah, its pretty hilarious. Also, its pretty horrible, haha! I wish she didn’t act this way when she isn’t happy. Its really hard for all of us to know what is going on, and to know if there is something seriously wrong happening. I am grateful that she is able to have happy moments though, and thats what I need to cling to.