Maintenance Month 3

After the first week of last month, the rest of the month went really smoothly! Liv did great and had very little symptoms once she was done with steroids. Yay!

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Super Bowl party at our house. She liked watching Grandma fill the deviled eggs and they all had fun playing with their cousins while the grown ups watched the game
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Rick and I went out of town for three days and I found this little note from Liv outside my bedroom door before I left.ย 

Valentine’s Day:

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Liv loved getting all dressed up for V-Day!

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A little Valentine from Mom and Dad and heart shaped pancakes on Valentine’s morning

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The girls were excited about their new Mermaid Tails and Street loved his new glow pillow pet
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My cute little Valentine’s!
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Liv and Street had a blast at their preschool party and couldn’t wait to dig through their loot when they got home!
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Grandma came over later that day with Valentine’s for all the kids

Liv wore little piggies to dance and was super excited about it ๐Ÿ™‚

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She also has had a lot of fun dressing up to match her dolly. She likes to have me help her do a new hair-do everyday on her.

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My grandma, Liv’s GG, wanted to have an ice cream party for all of the great grandkids. The kids had so much fun making their own ice cream sundaes ๐Ÿ™‚

 

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Liv of course loaded it up with sprinkles
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All the great grandkids with Great Grandma and Grandpa
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They always love to color at GG’s. Liv’s signature tongue hanging out is alive and strong

Monday was President’s Day and also the day before Daci’s birthday so we decided to go to the Children’s Museum to celebrate. Liv conquered a few of her fears there. I was really proud of her!

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She has been afraid of the “Monkey Slide” for a long time and has never gone down it on her own. She finally did it!
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She also has a fear of climbing and going up high. After some coaxing and teaching from Daci, she made it to the top!
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So proud of herself ๐Ÿ™‚
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Liv was really excited to give Daci her present that night. She picked out a My Little Pony and some fashion plates

Today was clinic. Liv got really upset last night when I told her that she was going to have to go to sleep at this visit. She cried and cried. When she woke up the next morning she kept complaining that she was hungry. She hates to fast for her LP’s. She whimpered almost the whole drive up and I was really worried about how she would handle clinic that day. I tried to be really silly and dance to the music. I got her to laugh a few times on the ride up ๐Ÿ™‚

When we got to clinic we were the only ones in the waiting room! They called us straight back and got her vitals taken care of and then she got to go straight back to get accessed. She was super nervous and whimpered for a minute, but when it was time to put the needle in her port she got really still and I could feel her try to be super brave. She lifted her chin up and didn’t fight it going in at all. I was so proud of her!

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Once she was accessed they gave her her Zofran and got the Pentamidine going right away. Yay! Everything was going so smoothly! The Pentam ran for an hour and while it was running Liv colored for a while. Then she played on her iPad for the rest of the hour. The doctor came in and said all her numbers looked good but her ANC was at 2100, which was higher than they wanted it. They’ve decided to increase her 6MP dose that she gets daily to see if they can drop that ANC a little bit. They want to have her closer to 1200. The immune system needs to be a little depressed so that the cancer can’t fight its way back. Hopefully we won’t see any added side effects due to the increased dose.

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All hooked up to her pole

We finished the Pentam and then they gave her her IV Vincristine chemo and then they sent us down to the CPC for her LP

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Liv loves getting to press the buttons in the elevator ๐Ÿ™‚

We got to the CPC early and they got us right back. Yay, again! The nurse that we see most times was there today. He is so cute with her. Liv is so quiet and shy but by the end of their conversation he had her smiling and talking about Moana ๐Ÿ™‚

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They got her back for her LP and I expected panic and crying, like the last few times. As we walked into the room where she goes to sleep she let go of my hand and I quickly darted to find her. I thought for sure she was running away. Haha! But to my surprise, she walked straight to the table all by herself! I was shocked. Then when I set her up on the table I expected crying and kicking and fighting but she just quietly snuggled into my chest, held my hand tight, squeezed her eyes shut, and waited for the medicine to be put in her port. I could once again sense that she was trying extra hard to be brave. I got tears in my eyes. Normally I have tears in my eyes during that part because she’s freaking out and it breaks my heart, but today it was because I was so proud of my brave girl. I honestly don’t know if I could face the things that she has to face each time we go to the hospital. I love that girl so much.

While she was asleep I went down to the pharmacy to pick up her prescriptions. I have not had one time that the prescriptions were ready for me the first time I go to get them. They always tell me to come back. I was shocked to find that they had them all ready to go. SHOCKED! Haha. This day couldn’t be going any more smoothly! I went back to the CPC and they called me two minutes later and said she was awake. I went back to find a smiling Liv. Yay! The nurse said she was great and all ready to go as soon as she deaccessed her. She normally wails and screams during deaccess, but again, I saw her draw in a deep breath, clench her jaw and didn’t make a peep as theyย pulled off the sticky bandage and deaccessed her. I’m telling you, this day was full of miracles!

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She was a little loopy getting out of the bed so we got a wheel chair for her. She gave me the sweetest smile on our way out and said, “Mama, I was so brave today!” Yes you were, sweet girl, yes you were!

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