I haven’t posted in a whole week, mainly because I haven’t had two seconds to breathe. Liv needs my attention round the clock, if I walk away and leave her, she starts to moan and cry. If she isn’t distracted, she is thinking about food. So, every waking moment is spent getting her food, cleaning up the mess I made while getting her food, playing Memory, getting her a snack, playing more Memory, getting another snack, playing more Memory….you get the picture 😉 The few breaks I do get from focusing on her is when I have to nurse Stade and when she is listening to Taylor Swift on her new iPad with her headphones 🙂 Her grandparents got her an iPad after seeing her on Easter Sunday so happily listening to Daci’s iPod.
Liv’s personality has changed quite a bit on the steroids. Everyone said it would, so we are just hoping that she will pop back to our happy, sociable girl once the effects of the steroids wear off. She doesn’t love to play with kids anymore, and doesn’t love to talk and interact with most adults. She prefers to play Memory with me, (and on occasion she is in the mood to have Street and Daci play with us) or lay on the couch and put her headphones on and listen to music (while loudly singing off key for the rest of us to listen to 😉 ). When other adults come to babysit, she is pretty withdrawn, unless they can get her wrapped up in a game of Memory. Haha. Then she will say things like, “Grandpa, you are NOT good at this game.” Haha! The steroids make her moods go up and down. Literally one second she will be upset and crying, and then a second later something will distract her and she will be talking normal with a smile on her face. She also has become super bossy with her siblings, and at times she can be mean 😦 Like I said, all the doctors, nurses, and friends I have talked to that know all about the steroids have said that it is so normal and to not be sad, she WILL come back.
She is hungry ALL.THE.TIME. She wants food ALL.THE.TIME. The first few days we just kind of let her have whatever, whenever, but when we realized how quickly her body was changing it kind of scared us. Not so much the weight gain and puffiness (she was up 7 lbs after 4 days, and 10 lbs after a wee, because that is a given on the steroids. Her heavy, labored breathing, and high blood pressure was what scared us. So, we had to start getting creative with all the snacks she wants. Sodium isn’t good for her, but its what she is craving. She doesn’t like sweet stuff at all (which, if you knew her before, is so crazy. She was a sugar monster!), the medications make sweet taste funny. She craves cheese and wants it constantly, but we have limited it to about 2 times a day. Her go to snacks right now are red peppers and baby tomatoes in either dip or hummus, mandarin oranges, peanut butter and jelly sandwiches, scrambled eggs, and cereal. For dinners she has been craving white chicken chili, taco soup, chicken and mashed potatoes, and pasta.
Night times have BY FAR been the hardest thing for me. After a full day of complete dedication to Liv, I am so exhausted. You would think I would get a break then, but no such luck 😉 Her insomnia is killing me! She is up multiple times a night, needing full meals, most of the times that she is up. The doctors said this is also completely normal. They are super hungry and want a full meal. Luckily, Liv is totally happy with a big bowl of cereal for one meal, and a pb&j sandwich for another. I take her downstairs, pour her her cereal, and go right back up. She puts herself back to bed afterward. Phew! Along with getting up for meals, she is getting up to use the bathroom A LOT and also to do things like blow her nose. Things that would never have woken her up before, are not only waking her up now, but keeping her up. She will be up for an hr and a half each time usually. On top of Liv’s sleeping issues, Stade has had a cold all week. He is also getting up 2-3 times a night. He and Liv seem to alternate when they get up so between the two of them, I’m getting like 1-2 hours of sleep, and not in a row! LUCKILY, three nights ago Liv said to me,
“Mom, you know why I can’t sleep at night, right?”
“Please, do tell” 😉
“It’s because my night light and noise maker are on!”
Her senses are so heightened right now. She has always had to sleep with those things on! Now that she has trouble sleeping, once she’s up, she can’t fall back asleep with the added stimulus. So, we tried turning them off three nights ago and she only got up once for food! The other millions of times she got up, she was able to fall right back asleep! Yay!
She got to do a few fun things for Easter. We colored eggs one day, and then we had an Easter Egg hunt with Rick’s side of the family indoors with the cousins so that she wouldn’t have to be out in the cold and digging in the dirt for eggs. She had a lot of fun, but was exhausted after about five minutes, and just sat by herself and listened to music the rest of the time. It made me happy to see her do some normal things, but sad to see how differently she acted compared to how she would have been normally.
Easter morning she was really happy and had fun hunting for her basket and being silly with her siblings. Morning is always her best time.
On Tuesday, Liv’s hair started shedding pretty bad. I knew that I needed to start warming her up to the fact that her hair would be falling out. We were playing Memory on the floor that afternoon and there was hair all over the rug.
I said, “Oh man! There is hair everywhere!”
Immediately she said, “It’s my hair!”
I was shocked that she even noticed. I said, “Liv, did you know that your Leukemia was going to make your hair fall out?”
Side note: we don’t ever say that her medicines are causing her side effects anymore. The first few days that she was on medicine we were telling people, her legs are sore because of the medicine, or she’s getting puffy because of her medicine. She started refusing her medicine and it was such a fight. We kind of put two and two together that because we were saying the medicine was causing the problems, she didn’t want to take it. So, now we say its her Leukemia that causes the problems, and the medicine is going to help fight and get rid of the Leukemia. That seems to work best for us 🙂
She looked at my confused and said, “No?”
I said, “Yeah, its going to make your hair fall out and we will need to cut your hair short pretty soon.”
She got sad about that, but then I said, “We will cut it shorter to look like Eleni’s!” (her cousin who has a cute bob cut)
Her face brightened and she goes, “Oh that’s fun! We can be twins!”
Then I told her that she would have it short for a little while, then the rest of it would come out, and then she would get to wear cute headbands and hats. She seemed ok with that. I don’t think she really understood that it was going to all come out. I couldn’t bring myself to say the word bald 😦 I decided baby steps were best, and this was a good introduction to the idea.
The next morning, I showered her and when I brushed her hair, A LOT came out in the brush 😦 I fought back tears as the brush filled with hair. Stade was crawling around on the floor by my feet. Daci walked in and could instantly tell something was wrong. I told her that I was fine and asked her to go get her shoes on for school. She left the room, shutting the door, so that Stade wouldn’t get out. I showed Liv the hair that was once in her head, and now all over her brush, and began the conversation that I had been dreading since I first found out that she has Leukemia. I reminded her about how her cancer was causing her hair to fall out and that we would need to cut it soon. And that after a little while, it would all come out. I asked her if she remembered the little girl she played with at the hospital that didn’t have any hair. She slowly shook her head “yes”. I told her that is how it would be for her for a little while, but that it would all grow back in eventually. As I was telling her this, Daci walked in the room and was curiously listening. A few seconds later, I heard the sickening thud of Stade’s hands and knees as he hurriedly crawled out of the room and into the hallway.
The whole next five seconds was a slow motion scene out of a movie, I took off as quickly as I could into the hall, just in time to see Stade take his first crawl off of the top stair. I dove for his foot and let out this hideous scream, I missed the foot and only barely grabbed the tip of his toe. He toppled, head over heels, for about six steps and landed on the back of his neck, his head facing his toes. I quickly scooped him up and held him to my chest, rocking back and forth and relieved to hear his crying and feel his body fight and squirm in pain. At least he wasn’t motionless! Rick came running up the stairs and saw that there was blood filling his mouth. I gave him to Rick and went to grab a wet cloth for Stade.
Rick yelled up to me, “Did he have two teeth on the bottom?”
I yelled back, “No, he has three!”
Rick replied, “Well, he has two now.”
Ugh, I was so sick! I ran to the stairs and saw the tiniest little baby tooth, with the whole root still intact sitting on the step. I couldn’t have felt more guilt if I tried. My poor baby! I wanted to scream at the universe. I was already having a conversation that no mom would ever want to have with their child. Then, BANG!, another thing happens that no mother ever wants to watch: their nine month old baby toppling down the stairs and having a tooth ripped from their gums. Boo! I wanted to collapse on the floor and bawl my eyes out!
Instead, I quickly called and made an appointment with our Pediatric Dentist and headed straight over to see him. Long story short, Stade will be fine, he just won’t have that tooth until it grows in when he’s around 6. Unfortunately, because he’s so little and everything hasn’t fully formed, it will create space problems so he will have to have other teeth pulled down the road and have even more of a gap for a few years. But, I digress….
I got back from the dentist and Liv wanted to play Memory, of course 😉 As we were playing, her hair was shedding everywhere. She goes, “Ugh, Mom! I just want to cut it now!” I decided that since she was ready, and it was all over the house, I should probably just get it cut soon. I called my friend, whose sister in law does hair, and she got an appointment set up for me that night. It was all happening so quickly, and part of me was so sad, but the other part of me was ok with it.
Later that day, Liv said, “Mom, I want to cut my hair, but I don’t want it all to come out.”
This naturally broke my heart, but I tried to stay positive. I said, “I have a friend who has a really cute little girl that also had Leukemia, just like you. Would you like to see pictures of her when she didn’t have her hair?” Liv said “yes” so I pulled out my phone and showed her a bunch of pictures of her with no hair and showed her how she wore cute headbands and hats. There was even a video of her singing “Let it Go” and Liv loved watching that 🙂 Then I showed her what the little girls hair looked like as it was growing in, and what it looks like now. She seemed to understand better what would happen and she didn’t cry about it.
Later that night, my friends sister in law came to cut her hair. Immediately she started acting just like she does when we go to the hospital. She was crying so loud and wouldn’t respond to anything that anyone said to her. The whole time she got her hair cut, she was crying 😦 It ended up looking so cute though and we all were trying to cheer her up. My mom and dad came to watch and when she was done, my mom took her to the mirror to show her. She gave herself a little smile and said she liked it 🙂 Phew! About an hour later, I tucked her into bed and I said, “Liv! Do you love your hair!?” She got really quiet, and covered her eyes, shook her head and whispered, “No, I didn’t want to do that.” That broke my heart all over again. I’m scared for when we have to buzz her. I hear by the time you need to buzz their heads, they are so sick of their hair all over everything that they are ok with it. I hope thats what will happen for Liv.
The next day was clinic. I have to admit, with how hard the steroids had been, and then with the hair starting fall out, I was pretty down and defeated that morning. When we got in the car to go to Primary Children’s, Liv was in good spirits, but as we got closer and closer she got more and more withdrawn. I was so not looking forward to the next few hours. Clinic days are always so exhausting because she is so sad and moody. I was already exhausted and wasn’t sure how I would be able to deal with this today.
We walked into the clinic and Liv actually said “Hi” back to the receptionist! WHAT!? It was a very soft “hi”, and her head was buried in my leg, but she did it! She said “hi!” Haha! I know it sounds small, but that was huge progress. She usually doesn’t respond to anyone and is a grouchy, grumpy mess! Then, she wanted to do a craft at the table in the waiting room! What!? Heck yes, we can do a craft! Wahoo! Then, they pulled her back for her port access. She started whimpering a bit as I pulled her up on to my lap. Then, she said, “I need my iPad.” We handed it to her and she immediately got busy building her cake in the Strawberry Shortcake app. She whimpered a little bit, here and there, as they cleaned the port area. She cried for about three seconds when they put the needle in, but all in all it was a MUCH better experience than the last few weeks had been! We were so happy that she had figured out what distracted her best during the port access!
The doctor came in and told us her numbers look great. She is in normal range in all of her blood counts! She hasn’t been normal in forever, even before we found out that she has Leukemia. This is normal. During induction, the steroids and the chemo are killing all the cancer cells, which allows for healthy cells to grow and fill the marrow. Because her counts are normal, she is less at risk for infection causing huge problems in her body. This means we can do a few things with her over the next few weeks! Yay! No more complete confinement of the next little while. She still cant be in really small spaces that are full of people, but she can go to the park or even the movies, if she wears a mask.
We have one more week of the steroids, and then next Thursday for clinic, she will have a lumbar puncture and a bone marrow biopsy. These will be sent for testing and hopefully the next day we will know if she is in remission. Meaning, there are no cancer cells found. If this happens, she will continue on with the standard arm of treatment for the next 2 years and 2 months.
We would appreciate prayers! Pray for good numbers next week so that she is just in the standard risk! Thank you and Loves to all!