Maintenance, Month 7

**Sorry, I’m a little behind on my blog posts because the day we got done with clinic we headed out on our 10 day trip to California. It is almost time to do the next months update. I’ll do that next week :)**

May 16th-June 13th

This month was full of fun end of the school year activities!

Street and Livvi finished up preschool and Liv had a fun playdate with her best little schoolmate, Gabrielle. They had fun doing games that they had seen on YouTubeKids. The played a princess game where each princess had a number on them and it corresponded to a paperbag that had fruit in it. They would take turns drawing numbers and putting that fruit in the blender, then they mixed it all up into a smoothie and drank it. It was pretty adorable 🙂

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We wake Liv up every night before we go to bed to give her her 6MP Chemo pill. She always looks so cute when we go in 🙂 She is so great to sit up, swallow her pill, and fall right back asleep.IMG_1496

More Physical Therapy!

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The last day of school I took the kids to the outlets to get some ice cream. They loved it 🙂 And yes, those are coats they are wearing the last week of May. So dumb! Haha.IMG_1780

Liv had a big day on May 27th. She lost her second tooth and we were able to get her hair in pig tails for the first time! She was so excited 🙂IMG_1881IMG_1895 (1)IMG_1905

We finished up Street and Daci’s soccer seasons. Liv was such a trooper going to all the games but told me she didn’t want to watch anymore, she wants to play! So we signed her up for next season with Street 🙂IMG_2051

I had been promising the kids they could have a sleepover all in the same room when school got out. The day had finally come and they asked if they could get their room ready for it. When I came upstairs to give them a treat for their movie, I found their room like this. Apparently getting their room “ready” for a sleepover means taking out every blanket in the hall closet and spreading it all over the room. Ha!IMG_2065

The day before Memorial Day we went to go visit Grandpa John’s (Penny’s dad) grave site. It was so beautiful seeing all the flags flying.IMG_2088 (1)

On Memorial Day, Rick had a big pickle ball tournament in Brigham City and we all went up to watch. The kids had fun running races in between matches.IMG_2197

We stopped by to see Liv’s piano teacher, Miss Calli and give her an end of the year present. Liv has loved taking piano from her 🙂 IMG_2259

Liv watched Daci and her cousin Eleni do a volleyball camp, she loved running the track while the girls did their camp

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More physical therapy. She was excited to ride this tricycle between buildings at the hospital 🙂IMG_2333

Liv spiked a random 101 degree fever one day. She had a headache and stomach pains and then the fever came on. I called Primary’s and they wanted me to come in with her. Of course, once we got there she didn’t have a fever and felt fine. Isn’t that how it always goes!? They gave her antibiotics and ran a virus panel which came back positive for adenovirus and rhinovirus (common cold viruses). We were there quite a few hours and were getting bored. We did some snapchat filters to keep us busy 🙂

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We had a shower for Liv’s Aunt Brookley at our house. Daci and Liv were so excited that they got to come be with the big girls! They loved playing the games (diaper candy bar game below) and eating yummy food 🙂IMG_2534IMG_2537

We had Stade’s Very Hungry Caterpillar Birthday Party the next day. I put my girls in their Pernsickety Dresses for the party and their cousin Leni randomly showed up in the same dress! So cute! IMG_2880IMG_2788

The rest of that week they did a basketball camp at Papou’s school. It was actually really hard for me to watch. Her low muscle tone was very obvious and it was painful to see the difference in Livvi compared to other kids her age 😦 She tired very easily, was a lot slower and weaker and always came in last. I could see it affecting her confidence and it broke my heart. I asked her if she would rather do something else the last day of camp and she adamantly exclaimed, “NO! I want to do the camp!” I was proud of her for not giving up.

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We had clinic and since it was summer (less risk of infection) and school was out, I got to bring Daci with us! Hooray! It was so nice to have someone that Liv adores there. It kept her happy the whole time and it was much less work for me. Haha. They had fun playing Headbands and Trouble and we got out of there pretty quickly!

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About two hours after we got home, we hopped back in the car and headed out for our Roberts Family Trip to Carlsbad, CA! We made the first leg of our trip to St. George that night. I worried Liv might be nauseous in the car because she had just gotten chemo and Pentam, but they all did great and she wasn’t sick at all!

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Maintenance Month 6

This month was busy with a fun family trip and some holidays and Liv did great throughout the whole month! They put her 6MP chemo dosage back to what it was before, because last month when they increased it her counts tanked. So she felt great and had an awesome month!

On day 2 of steroids Liv was pretty moody and hungry, so we remedied that with some gluten free baking. She made Blueberry muffins and did every step all by herself, even cracking the eggs! She loves to bake!

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We went on a family trip to St. George this month and it was SO much fun! Rick had a pickle ball tournament down there so we decided to make it a family affair. We haven’t done anything like this since Liv was diagnosed, I’m so glad we were able to now!

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We went to the St. George Temple grounds and walked around and went through the Visitor’s Center

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We took them to the new All-Abilities park, Liv’s favorite part was the zipline 🙂

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I think we ate at Chick Fil A three times in two days. Haha! It is the kids favorite and it has gluten free stuff, which is perfect for Liv!
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Liv was still on steroids over our trip, she has insisted on doing her own meds lately. She scoops up the applesauce, puts the pills on the spoon, and puts it in her mouth on her own. Haha

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While I watched Rick play in his tournament, my brother and sister in law had a swim day with my kids. So nice of them!

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They took a break to come down and watch a match, they brought their homemade signs to cheer on their daddy 🙂

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Liv had a blast each day, but was definitely worn out by the end!

When we got back, Liv got to be the Star Student and line leader for the week. She was so excited!

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She had physical therapy with her new PT assistant. It is taking her longer to warm up to him, he’s very nice, just a lot quieter than Alex. She loved Alex and was completely herself and never fought them on doing the exercises. Ever since he left, she has kind of been a stinker for therapy. She will do it, but only if I bribe her with something first. We have noticed a big shift in behavior this month. She is so stubborn! I’m glad she is stubborn in so many ways, it has served her well in her battle with cancer, but theres a point where it can be bad. Haha. She refuses to do things and throws big gigantic tantrums to get what she want. When we are in public it is really hard for me to get her to stop without bribing her, and generally its food that I bribe her with because it is what works for her.  I know that I have to stop this. First of all, it isn’t healthy for her to have fries and ice cream all the time. And secondly, I’m breeding and reinforcing that bad behavior of her thinking she should get something every time someone wants her to do something. Its been a bit of a battle trying to correct this over the last month, but its slowly getting better 🙂

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She gave the scripture in church and just thought the twins looked so dang cute that I had to snap a pic 🙂

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She is loving playing the piano still 🙂

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The next week at therapy… she was still a stinker. She wouldn’t answer the questions and she wouldn’t do the exercises willingly. After therapy she happily said, “Where are we going to go eat today, mom?” I told her we weren’t going anywhere, that we were going straight home and she would get a sandwich. She was ticked! She threw a HUGE tantrum the whole way home, it was really fun. Not. Hopefully over the next few weeks she will have better behavior.

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I just love everything about this pic….dandelion wishes, Honey tucked under her arm, piggies, and her knock-knees
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A new exercise this time….balancing on the bosu ball and throwing a ball back and forth with her therapist
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She also got to ride the trike over to the hospital to do the stairs. She was really tired after riding it! It really made her use her legs.

For my birthday she and Street asked if they could make me “birthday sprinkle pancakes”. She was so excited to do everything herself. She’s becoming a good little cook!

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My cute kids on my birthday 

The weather has been so bipolar this spring! We had a good day this week and the twins wanted to get in their suits and have a water fight.

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On Mother’s Day the twins gave me these adorable pictures in their graduation cap and gowns.

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Liv drew this picture of me
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With mom on Mother’s Day
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Cutest siblings

The twins graduated from Preschool on Monday! I can’t believe they will be starting Kindergarten so soon! They have loved going to preschool with Mrs. Barb. We are really going to miss her!

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Liv with her best little friend 

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We had clinic today. The morning started out really rough. Liv had to fast because time she had to have a Lumbar Puncture. She cried and cried and said she didn’t want to go. My heart broke for her. When we got in the car I told her I understood that she was sad and scared so I was going to let her cry for five minutes and then we needed to be tough and brave and happy. She wailed for five minutes and then when I told her it was time to stop, she immediately did and was happy the whole rest of the day! I was so proud of how brave she was!

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She made a wish in the fountain this morning

We played Memory for a while and then our nurse brought in another fun game. We played Headbanz for over an hr and Liv thought it was the greatest thing. Haha. She picked food for almost all of my cards. I think she was hungry 😉

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Our favorite nurse is nurse Becky. She is so great with Liv. Liv is still really quiet and reserved with her, but she will respond and its clear that she likes her. When we got to clinic today, her meds weren’t ready. I was so nervous that we wouldn’t get them in before her LP. Liv does NOT do well when we have to go back up to clinic for hours after an LP. Becky was so great and got right on the pharmacy to get them up. Just when I thought the window had passed to start them (it takes an hr and a half to administer her meds), Becky came in and said that she didn’t care if we were 15 minutes late to the LP, she was going to start the meds anyway. She knew it would be so hard on Liv to come back up afterward. She is the BEST!IMG_1215IMG_1221

When it was time to go back for her LP she whimpered a bit, but she was so brave and climbed right up on the table and buried her face into my body. I held her tight while they put the sleepy meds in her port and she drifted right off to sleep. I was so so proud of her.

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After she woke up. By the time I got back there she had already told her nurse that she was going to get Chick Fil A right now and go see daddy at his new office. Haha 🙂
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Happy as can be eating Chick Fil A at her dad’s office 🙂

Her ANC was all the way up to 3100 today 😦 Boo! That means going back to the old dose of 6MP isn’t going to work. She should be at around 1000. We have been doing 6 days of 1 pill and one day of 1 1/2 pills and she is too high on that. Last month they tried 6 days of 1 1/2 pills and one day of 1 pill and her counts tanked and she went all the way down to 200. So this month we are going to try 4 days of 1 1/2 pills and 3 days of 1 pill. Hopefully that will get her right in the middle! Thanks to everyone who continues to pray and think about Liv. We are so blessed!

 

Maintenance Month 5

This month was SUPER busy! She had a few ups and downs, but overall it was a good, fun month!

She is still doing Physical Therapy weekly and she is getting stronger! She still has a long ways to go but we are so happy with her progress.

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Balance beam across the room to get a puzzle piece, then back to the other side to put it together
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Her therapist, James, helping her with the puzzle
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Her therapist, Alex, timing her on how long she can balance on one leg
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balancing on one leg and throwing the ball back and forth
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Walking the treadmill for about ten minutes each time. Its crazy to watch her do this, it really shows how weak her walk is. It is very wobbly, it doesn’t have a rhythmic gait, her left foot flops inward, and she walks on her toes. We also have discovered that she doesn’t swing her arms when she walks. Most likely because her core is weak so she has to focus on her core as she walks. As a result her arms hang stiffly at her side when she walks. We are working on all of this with her 🙂 
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Climbing the ladder to the ceiling. It takes a lot of muscles to be able to get up there and is really exhausting for her, but she really loves to do it. Last time he made her do it 5 times and by the end she was so tired, but when she finished she said, “One more time!” She is very determined 🙂
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Her favorite thing is when she gets to go do therapy outside on the playground. Alex was so awesome with her. He would run up and down the playground with her, race her down the slide, and do the balance beam all the way around. This was Alex’s last rotation before he graduated. His last time was last week and we were sad to see him go 😦
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Doing her stretches and exercises each night before bed at home.

Some fun activities she has been up to:

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Going to school 🙂
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She learned to tie her shoes this month. She has been very determined with this as well.
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We went to see Beauty and the Beast with cousins
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She loved dressing up like Belle for the movie
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She got to go to a Princess Birthday Party with her school friends and wore her Rapunzel dress

After I picked Liv up from the party (this was a Friday), she seemed really tired. By about 5pm she was looking very pale to me, almost like a gray color. She was crying and saying she was tired and that her legs really hurt. We were supposed to get a blood draw on Monday to be sure that her chemo increase wasn’t tanking her counts, but I got worried and decided I should do it earlier. Unfortunately all the doctor’s were closed for the weekend so I messaged my doctor on FB (yes, I’m friends with my doctor on FB and she was awesome to answer me). She put in an order for labs to be done earlier, so I decided to take her in the next morning. That night however she started getting a fever and I was nervous I was going to end up in the hospital with her. Rick was out of town and I really didn’t want to do that. Haha. She stayed at 100.2 for about 4 hours (100.3 for an hour or a single reading of 101 is when you must go to the hospital) and I took her in early the next morning. I got a call from the on call doctor’s office at about noon. The nurse sounded kinda panicked and was like, “Um I need to know what Livvi’s symptoms have been and why you decided to take her in for bloodwork.” I don’t know what happened to me. It was like the concern in her voice mixed with me already being worried that she was acting like she did when she was diagnosed that sent me into some sort of panic. I couldn’t think straight, my heart was racing, I felt like I couldn’t breathe. It was terrible. It was like I had some sort of PTSD from that very first diagnosis call a little over a year ago. I kind of squeaked out that she has Leukemia but couldn’t really say much else. The nurse said that she was going to talk to the doctor and they would call me back. I hung up and immediately called my mom (Rick was playing in a tournament), I was crying to her and telling her she needed to talk me down. She got me calm and once I could think straight, I realized that her counts would look really scary to a doctor that didn’t know her. Her counts are very odd compared to a normal child, but they are supposed to be that way. The point of Maintenance is to keep her slightly immuno-suppressed so that the cancer doesn’t come back. Once I could think logically I was able to calm down 🙂 It felt like an eternity waiting for them to call me back though! Once they did I found out that her ANC was all the way down to 200 and her WBC were pretty low as well. I called the on call oncologist at Primary’s and he told me to hold her Chemo for the weekend and then on Monday to call Dr. Afify and find out what she wanted us to do from there. On Monday they told us to hold her chemo for the full week and then we would get counts again on the next Monday to see if they had come back up. I was concerned that stopping chemo would hurt her treatment but they told me that it was common in Maintenance to get a little bug and need to stop chemo for a bit so that they could recover. That made me feel better 🙂

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Fred kept the kids for me the rest of the day so I could just spend time with Liv while she wasn’t feeling well. Penny came over between Conference sessions with a fun Paint by Number activity. Liv loved doing that with her
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On Sunday we had dinner at Daysha’s house in between sessions. Liv loved playing with the kids, but I could tell she was really weak and tired.
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When we got home that night she cried and cried. She wanted to go to bed at 5pm 😦
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Daddy came home that evening and all the kids were so excited to see him!

By Monday she was feeling much better and was excited to do some fun stuff for Spring Break!

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It’s fun that her hair is long enough to have piggies now!

GG had us over for a play doh party with Sage. The kids loved it!

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The next day we took the kids to Cravings Cupcakes to get Unicorn Floats!

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The blossoms were so gorgeous this week!

We celebrated Easter a week early with my side of the family. We had a big Sunday dinner, dyed eggs, and did an Egg Hunt

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They got a lot of loot!

On Monday we went back to AF Hospital to get labs drawn. She came back with an ANC of 2300. Wahoo! That week off of chemo really helped her to recover. Dr Afify had us go back on the chemo but on her old dosage. So one pill every night, and a pill and a half on Sunday nights.

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We went to Costco later that day. They all wanted to sit in the cart and thought it was hilarious that everything was piled up around them

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We had to go to Liv’s yearly orthopedic appt. She has had her legs x-rayed the last two years because of her knock knees. Last year they thought that they may straighten out on their own but I have been feeling like they are getting worse and could also be affecting her walking, along with the low muscle tone. Sure enough, they did x-rays and they showed that they have gotten worse. So, she needs a simple little surgery. They will cut one inch incisions on the inside of both legs and place a plate between the two bones. This will help the bones to grow straight and in the correct position and then a few years later they will remove the plate. Dr Ford assured us that it is a very simple procedure and not something that needs to be done right away. He recommended we finish up her Leukemia treatments before we do the surgery, so we will plan to do it next summer!

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Liv and I spend a lot of time in the car alone together. We have lots of fun cranking up the music and singing together 🙂

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Easter Sunday:

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Liv’s hair has been so fun the last two weeks. Its long enough to curl with a baby curling iron!

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We went to Yia Yia’s house after church for dinner and an egg hunt

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Meeting her new Cousin Noah for the first time. She was in heaven holding him. Yia Yia’s friends made this adorable Belle wig for her!
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Egg hunt with the cousins!

The next day we had the awesome experience of going to the Charity Basketball Game that Fred and Penny’s school put on for the Make A Wish Fundraiser. Rick helped get  a lot of former BYU players there and the turn out was amazing! They made Liv feel so special all night. She got to hang out with Cosmo and the BYU cheerleaders, she was given an incredible Minnie Mouse cake made by an 11 year old student (because her wish is to go to Disney World), and she got to get lifted up by some BYU players and make a basket! It was such a special night for Make A Wish and we were honored to be a part of it!

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The next morning Liv was getting ready to go to clinic. She was braiding her barbie’s hair and when she pulled the elastic out with her teeth she yanked her loose tooth (she has had a loose tooth for two weeks! I was shocked that she had one so young!). She came running to me, panicking, with blood coming out of her mouth. I told her not to panic, that her tooth was just hanging on by a thread and that I could pull it for her. She said she wanted to wash her bloody hands first. She came out of the bathroom a few seconds later with her tooth in her hand! She was so proud and excited 🙂IMG_9240IMG_9251

She couldn’t wait to show everyone at clinic that she lost her tooth 🙂 She also couldn’t wait to show them her new Belle wig 🙂

Clinic went pretty smoothly this time. The meds were all ready and we were able to get everything going pretty quickly. Her counts were:

ANC 1100

WBC 2.5

Hemoglobin 10.5

Hematocrit 31.5

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When she got home she excitedly showed Daci her lost tooth and they got busy making something for the tooth fairy 🙂 They made a little lego car for her to take a ride in and gave her some starburst jelly beans. Before Daci went to bed that night she slid a note under the door for the tooth fairy. It said, “Liv’s first tooth. Leave a note please. Thanks!” Haha. SO sweet. Liv woke up the next morning with $1 and a note from the tooth fairy. She was so excited to show us!

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Maintenance Month 4

This month has gone GREAT! Liv has been happy and felt great!

There was one big thing that happened this month, however. I have been worried about Liv for a while. We have always commented on how Liv is our clumsiest child. She trips and falls ALL THE TIME, her legs look like noodles when she runs, and she snaps her knees back and slaps her feet when she walks.  She also doesn’t ever hold her body up when she is sitting on your lap, she just completely melts on to you and doesn’t use her abs. I used to brush it off as she was really tall and just hadn’t gotten control of her body yet, but the further and further she fell behind Street and her other peers, the more I worried it was something more than that. I worried she had some low muscle tone. I brought it up at her 5 Year Well Check visit with her pediatrician and he had her do a few things for him. He said he felt that she looked like she did have low muscle tone and referred me to a Pediatric Rehab facility to be diagnosed.

I took her to the appointment in Orem and they had her do a bunch of strength exercises and stretched her in a lot of different ways. The appointment took two whole hours and she was on steroids at the time, so she was not the happiest of campers. By the end they diagnosed her with low muscle tone in her legs and a little bit in her abdomen. They sent us home with daily stretches and exercises to do with her and also told us she needed to come in for Physical Therapy once a week. I was so grateful to get a diagnosis and have something to help her, but was also completely overwhelmed with more doctors appointments. My heart also broke for her, just one more thing to add to the list of things that she has to do and that makes her different from other kids.

We have gone three times though, and have already seen some improvement! At the first appt, they could barely stretch her calves. By the second appt, after we spent all week stretching, there was a HUGE improvement. The Vincristine chemo she gets once a month is very hard on their leg muscles and tightens them up. I’m glad to know of some stretches to do for her to keep them from tightening up.

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At her initial appt, where she got diagnosed. Don’t let the smile fool you, she was really grumpy the whole time and wouldn’t talk to James at all.

Here are some fun things she has been up to:

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The kids love to get their haircut at Cookie Cutters. While the boys get their haircuts, Liv plays on the slide 🙂
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She is the BEST big sister to Stade. He adores her and says her name all day long: “Wubby!”
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Liv had a playdate with her cute friend from school. They had a blast doing makeovers 🙂
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Building towers with Stade

We got a phone call from Make A Wish asking us if Liv could be their Wish Kid at an upcoming assembly. When they told us it was for Lincoln Academy, Yia Yia and Papou’s school, we were so excited! Their student council has been working so hard to raise money for Make A Wish. Their goal was to earn enough money for Liv’s wish, but they already have raised more than that!

This was at the Fundraiser’s kick off assembly. I had to speak for about five minutes on what Livvi was diagnosed with, what this last year has been like, and our experience with Make A Wish so far. It was the day before our one year mark since diagnosis and I was very emotional. I didn’t expect to cry, but I sobbed up on the stage, haha.

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Liv with her Yia Yia

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The Student Council made a basket for her and also made her that floral crown and bracelet. She loved them!

After the assembly we headed to her second physical therapy appointment. Surprisingly she was amazing and was very talkative and had so much fun with her therapists. They are great guys and do such a good job with her! They make therapy fun, which makes it a lot easier for the kids to like.

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For this exercise she is strengthening her core. The shapes are on the ground and she has to lean down to grab one, and then use her back muscles to pull herself up without using her hands and put the shape in the sorter
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This exercise is to strengthen her legs and help her with balance. There is a balance beam that goes across the room. She walks to one end and gets a puzzle piece, and then walks along the beam to the other end to put the piece where it goes. She does that for the whole puzzle

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We then go for a walk to the hospital, the whole walk over she is supposed to walk on her heels with her toes up because she has low tone in her muscles in her shins. Once she gets to the hospital she does stairs. She has to do them one foot at a time (she has always gone down the stairs meeting her feet together on each stair) and she has to practice going as quietly as she can because she just slaps her feet down and doesn’t use her muscles

Here are some more things she has been up to:

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Costco trips with Street and Stade while Daci is at dance
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The weather has FINALLY warmed up a little bit! The kids have spent a ton of time on the swingset in our backyard 🙂
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Daci was baptized last weekend and it was such a special day with family!
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Doing her exercises each night before bed 🙂

Another PT appt:

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This exercise was really awesome. That cone is very flexible. She had to tap the cone, alternating feet, over and over again. Any time she made the cone collapse, she lost a point and any time she tapped it without making it collapse she gained a point. I think she had to get up to 50 points. She was exhausted by the end! It really worked her muscles and helped with balance.
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Next she got to go out on the playground. She did a ton of climbing up the stairs and the ladders and the rock walls and then she would get to slide down. Her therapist was so cute with her. He raced her down the slide and she loved it. He is a big guy and he had to slide down on his hip so he didn’t get stuck. haha!
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Heel walking around the whole playground. She really doesn’t like to heel walk 🙂

Over the weekend the weather was beautiful and we went to play in Yia Yia and Papou’s backyard. Both Daci and Street can do the monkey bars now and Liv kept wanting to try but couldn’t even hold on to the bar for more than like two seconds 😦 We will keep working though!

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Liv learned how to braid this weekend! I taught her at the beginning of sacrament and by the end she could do it 🙂
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So proud of herself 🙂
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Her hair is at a really cute stage right now!

Clinic was  yesterday and she did pretty well. It was a REALLY long one. She usually does really well for about two hours, but anything after that gets hard for her. Her appt wasn’t until 1:30pm this time and when we got there we found out they didn’t order her meds from the pharmacy ahead of time! Ah! The pharmacy there is just slammed and it always takes a really long time to get anything from them. There were also a bunch of people in clinic that day and they didn’t have a room for us for quite a while. Once we finally got in a room we played Memory and she had a lot of fun with that. Then Dr. Afify came in and she gushed and gushed about how beautiful Liv is 🙂 Of course Liv didn’t look at her or talk to her, ugh! haha. Then Rick showed up and totally surprised us! He had meetings and couldn’t come with us to clinic. They finished up and he stopped by to surprise us on his way home. It was really fun 🙂 By the time the sent us back to infusion it was already 3:15pm and we still didn’t have the meds. Ah! Finally at 3:30pm they brought them up and we got started. They did her Zofran and her Vincristine first, then they hooked her up for the 1 hr 15 min infusion of Pentamidine. Just like always, about ten minutes into the transfusion she started feeling yucky 😦 She was sad and flushed and nauseous and had a headache. I hate to see her so sad. She did great though and watched a show the whole time, the only time she cried out loud was getting deaccessed. She hates that. But it was quick and we were on our way! Until of course we got to the car and realized it was rush hour. Waaa! It was a long ride home and she was really nauseous. She had her barf bag in her hand the whole time but luckily the Zofran did its job and she didn’t throw up 🙂 Done with clinic for another month! Yay!

Her counts:

ANC 1100

Platelets 220,000

WBC 1.8

RBC 9.9

Her ANC went down to a good range after Dr Afify increased her dose of 6MP to 1.5 pills 6X a week and 1 1X a week, rather than what it has been at 1 6X a week and 1.5 1X a week. But her WBC and RBC dropped a little bit. They still would rather keep her ANC in the right range and have the rest a little low, but they are going to get a CBC in 2 weeks to be sure that it doesn’t keep dropping further.

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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. 

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 🙂

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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 🙂

 

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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 🙂
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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 🙂

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 🙂

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 🙂

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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 they 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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Maintenance Month 2

We left off with Liv finishing her chemo and going to the BYU game with Mac’s gift the next night. Over the next 4 days she continued her steroids. She was SO much better than she ever has been on steroids! She still got moody on day four and five, but not nearly as bad as it had been. Yay! This helped me feel like Maintenance could actually go well!

One night we had my whole family over for a party. We played games and made face masks for our black heads. Haha. It was really fun! Liv was extra tired and sad during the party so she mostly sat on my lap while the other kids played. As long as she was on my lap, she was happy though 🙂

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The next day was  her last day of steroids and she was still pretty sad so I suggested we do her favorite thing….bake/cook! She wanted to make White Chicken Chili for dinner, so thats what we did! It helped her get through her sad time.img_3485

 

Street started a little basketball camp. Liv, Stade  and I would go sit and watch him. Liv didn’t especially like to sit there, especially when she was still emotional from steroids, so I let her bring her iPad the next time. That seemed to help. She listened to the Moana soundtrack and sang along the whole time 🙂img_3782

I talked a little bit about the sweet girl in our neighborhood that got diagnosed with ALL in November. Her family decided to hold a bone marrow drive in Liv and Harper’s honor. The local news caught wind of it and wanted to do a story on the girls. We shot for ABC 4 and KSL News and then The Daily Herald called us for a phone interview and did an awesome article. Liv was super shy and nervous to meet Harper for the first time, but they had fun playing with each other, and when we all left the room she opened up a bit more. Luckily they both had mics on so we picked up some of their cute conversations 🙂

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We have really been trying to cut back on TV around here. Since Liv was diagnosed I feel like they have watched a lot more, she was so tired and didn’t have much energy to do anything else. Now that she is doing better we are trying to encourage other activities.  She and Street have really enjoyed building puzzles together 🙂

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It was finally time for the twins to turn FIVE! They had been asking for months when it would be their birthday 🙂 We had a fun Rainbow Art Party. We tried to keep it pretty low key to avoid too many germs and too much chaos, so they invited their cousins and then I let Liv invite one friend from school and Street two friends, since we have less boy cousins 🙂 They painted and made candy necklaces and played Musical Rainbows and ate lots and lots of treats 🙂

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Three days later it was their actual birthday. Here are Liv’s five year old pics:

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I was feeling extra nostalgic and went back through the years and found pics of them on each of their bdays. Love these two and I am so grateful that they have each other!

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At school for their birthday their teacher spotlighted them and Liv got to be the line leader and Street got to be at the end of the line and turn of the lights 🙂 They each brought treats for their friends. Street chose Valentine Candy Hearts and Liv chose sour gummy worms (her favorite candy right now).

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The day of their birthday I took them in for their five year well check appointment. I was feeling a lot of emotions at that point. Last year on their birthday I took them in for their four year well check and that was when Liv had her routine finger poke come back concerning. That kick started six weeks of testing before we finally found out she had Leukemia. I was so happy when her finger poke came back normal this time!

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That night the twins’ Yia Yia and Papou and Aunt and Cousin came over with dinner, cake and presents!

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The Young Women in our ward hosted a cute Spa Night for Harper and Liv and their sisters. It was the CUTEST thing ever! Liv walked in really shy but within about ten mins was her normal happy, silly self. They sang Moana songs at the top of their lungs while they got their fingers and toes painted and made necklaces 🙂

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Liv had a playdate with her cute friend. We don’t do many playdates, mainly because for the last 9 months I was trying to keep germs away, but also because its kinda tricky with twins. If we do a playdate, we usually have to invite a friend for Street and a friend for Liv, and sometimes the combination of the four kids the same age becomes chaotic. But this particular day Street had been invited to a friends house so I told Liv she could have someone over. She was ecstatic! They played all thing girls…dance parties, dress ups and art 🙂

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We have gotten SO MUCH snow this month. One Saturday it was coming down hard so the kids begged me to let them go play. We got them all bundled up and they played outside for over an hour!

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One day we had our cousins over. We made peanut butter cookies with the big kids while the two babies destroyed the family room 🙂 Liv loves her cousin, Sage, and is very mothering to her 🙂

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Liv got a cute doll for her birthday and she was having fun setting up photoshoots for her. Stade came over, plopped down next to the doll, and said “CHEEEEESE”. As Liv was taking the pic he bent over and laid a big wet one on her. Haha! Notice Liv’s tongue sticking out, its ALWAYS sticking out when she is focused. Haha.

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We had clinic again and this time I remembered to have them give her Zofran beforehand. She did much better while getting her Pentam and Chemo and didn’t get nauseous at all. Yay!

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This pic is just because I think she’s adorable and because she loved matching her Honey for school that day. This girl LOVES kitties 🙂

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We took the boys to get their haircut and Liv had fun sitting on the hippo and watching 🙂 I’m not going to lie, things like this still give me anxiety, knowing how many germs are probably floating around, but I try to just be as cautious as I can and enjoy life. She sanitized right after we left 🙂

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The next day, so two days after chemo, Liv didn’t look very good to me. It started making me nervous. Her coloring was really off. She looked yellowy pale, really sickly, like she did when she was first diagnosed. She also was complaining of her legs hurting and wanted to go to bed at 5pm. She continued to cry about her legs for two hours. We considered calling the hospital, but decided to wait until the morning to see how she was.

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Her coloring looked a lot better the next day and she was happy and went to school. She did start complaining of leg pain again later in the afternoon and was really tired. I think the chemo just hit her extra hard this time.

The next day she was even happier and we were given floor seats to the BYU game. We decided to take the twins for a date. They LOVED it and felt so special to have their own date. It didn’t start until 7pm (their normal bedtime) so by half time they were pretty tired. We ended up leaving half way through the second half because Liv kept saying she wasn’t feeling well, but overall it was a really fun night with them!

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Here’s a sample of Liv’s meals by the time Day 5 on steroids rolls around. Two pieces of French toast, a bowl of Strawberries, a bowl of taco soup, and a cup of milk. She still wanted more after, but I made her stop. Haha

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Liv has been really into texting me lately. She has her own apple ID so she can send me messages if she’s on wifi. One day when I was grocery shopping while Rick was home I got a few texts from her and then this cute picture she drew. It made me smile 🙂

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First Month of Maintenance

We did so much this month! Not only was it December, probably the busiest month of the year anyway, but Liv could officially do everything we did again! It was a really fun month. I’ll mainly let the pictures do the talking….

 

During Maintenance she takes a lot of pills. The first five days of every month she is on steroids. She has to take an antacid (the capsule) while she is on steroids because she gets acid reflux when she takes them. She also takes the 6MP chemo pill (the larger round pill) every single day for the full year and a half. On Thursdays she takes 8 Methotrexate pills, except for the week that she gets her Intrathecal Methotrexate with her Lumbar Puncture. She does that every three months. She also gets IV Vincristine chemo the first day of every month when we go to clinic, and she also gets her Pentamidine that day as well. Phew! Thats a lot of meds! BUT we are so grateful that the majority of them are done at home. Yay! We only go to the hospital once a month now, versus the once a week we were doing.

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We had some trial and error that first day. Her 6MP has to be taken on an empty stomach, which means she cant have had food for an hour before and two hours after taking the pill. We discovered thats a VERY hard task for a girl who is starving while on steroids. I tried to do it in the middle of the day the first day, but she was already so hungry and after just one hour she was crying, “I can’t do it, Mom! I can’t do it! I’m too hungry!” She cried and cried. Its amazing to me how hard the steroid affects hit Liv. They make everyone emotional and hungry, but Liv seems to react much more strongly than most. She was already emotional and starving after just two doses. It made me so nervous for the rest of the five days on steroids.

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The next day we decided to do it differently. Liv goes to bed at 7pm. She is practically begging us to put her to bed at 6:30pm most nights. We decided best case for her was just to wake her up after she’s been asleep for two hours, give her her pill, and she just falls right back to sleep. This has worked great all month for us!

Our awesome community decided to “Light the Boulevard” for three sweet girls: a little 3 year old girl in our neighborhood who had just passed away that last week of November, another 4 year old girl just up the street from us who was also diagnosed with ALL, and Liv.  There are pink and purple decorated trees all over Traverse Mountain. It was so sweet and touching and the kids have loved looking for pink and purple trees every time we are out driving.

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On December 1st the LDS Church launched a Light the World campaign, aimed toward serving others as Christ did all throughout the month of December. Liv, Street and I put together a care package for the little girl in our neighborhood that was just diagnosed and delivered it to her. Then, when we got home we had two sweet people come and serve Liv! One of my friends brought her a Roxberry because she knew she was struggling with feeling hungry, and another friend of mine came to visit and her daughter had made Liv these incredible tiny princesses made out of clay! Liv felt so special and it was so touching to all of us.

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We got to go to the Millie’s Princess Foundation Christmas Party. It was so much fun! They had Santa there, the kids got to make Reindeer Food, ornaments, and color pictures. They also had yummy refreshments and then they got to play with some baby bunnies at the end.

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Our traditional ornament opening from Grandma.

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Still hungry on steroids! Luckily her tastebuds like a lot of healthy food when she is on 6MP.

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We went and decorated our own pink tree on the boulevard with Grandma and my aunt and cousin

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Daci’s art contest project won at the District level! Her story of her project was about being a big sister to Livvi and her brothers and helping her navigate through the “rough waters” that is cancer. Liv was so excited to have Daci show her which of the little fish represented her (the pink one with the headband) and was also excited that she got to go watch Daci receive her award.

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I took the girls to see The Nutcracker with my mom. It was so much fun to be able to take her out in public and start a tradition with her!

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Daci and Livvi’s little song and dance class put on a showcase for the parents. They did so great!

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Two weeks into this month they wanted to check Liv’s counts to make sure the meds were working correctly. Liv was so happy that Daci could be there with her and wanted to hold her hand. She was braver than I have ever seen her. She puffed her chest out and didn’t even flinch or whimper when the nurse came at her with the needle. It’s amazing how well she does when Daci is around. She idolizes her. I hope they always have a great relationship.img_2284

Her counts

ANC 2300

Hemoglobin 11.8

Hematocrit 35

Platelets 320,000

WBC 3.2

Her counts looked awesome! Her ANC was a little bit higher than it should be, but not bad.

Her hair is getting longer! She loved her little mohawk 🙂

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We got to go to the Mac’s gift event. It was incredible. It is a two night event. The first night the parents go and have a nice dinner and then they get to go shop for their kids. We got to pick presents for every one of our kids. We were overwhelmed with gratitude for this incredible foundation that helps so many families that are going through a hard time. The second night was a family party. They had many characters there (superheroes, frozen characters, princesses, and Cosmo the BYU Cougar). The BYU basketball team was also there playing games with all the kids. At the end of the night we got to go see Santa and get a ticket to the North Pole. Each kid got to go into the “North Pole” and pick out a present without their parents. It was interesting to see what toys they each chose 🙂

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We had a very special family do The 12 Days of Christmas for us. They were so awesome! Each morning the kids were so excited to hear the funny story they had planned for that day and open their gifts.

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Two Turtle Doves
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6 Geese a “leiing”
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8 Lords a leaping…..doing leap frog races 🙂

We also had another family do 12 Days for Liv, she was excited to open the door each morning to see what she would find! We are so grateful to these sweet, anonymous families!

Papou’s basketball team made it to the Final game. We all went to watch and then got ice cream afterward

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Liv had had a cold for a few days and one night when we went in to give her her chemo pill she felt warm. We took her temp and it was at 100. We are supposed to take her in if its 100.4 for over an hour, or immediately if its 101 or higher. We checked her again a half hour later and it was at 102. Rick took her in to the local ER and I stayed home with the other kids so that we didn’t have to call our parents late at night. He called me a little while later and said  it wasn’t going well. No one there was experienced with port access. They tried to get it in and missed the port. They said they could get the supervisor to come but it may take a while. By then she was crying for me so I called Rick’s mom to come out so I could go over. While they were driving here Rick called and said the supervisor came to do it but by then her numbing cream had worn off and it hurt her really bad. I walked in to the room and found her like this and my heart broke. With how well everything has been going, I sometimes forget that she is going through the worst experience anyone should ever have to go through. They ran labs and tests on her and gave her a dose of Recefin. Her ANC came back at 4500, which is higher than she should be at, but makes sense because she was fighting an infection. Everything came back clear so we got to go home. The next day she was doing great!

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All dressed up for Uncle Dawson’s wedding open house!

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We have Christmas Adam (Dec 23rd) at Yia Yia and Papou’s house. We had a delicious dinner, then the kids sang us songs afterward. It was so special to hear the kids sing “Picture a Christmas” while Yia Yia accompanied them. Santa made a surprise visit at the end of the party.

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Jami from Persnickety clothing came out to bring my kids adorable PJ’s. Persnickety and Millie’s raised money for us with the adorable Mya dress and they presented the check to us this week. We are so grateful to both of them!!!

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Just because I think she looks so beautiful in this pic

 

Christmas Eve we went to GG’s house! We had our traditional Chicken Noodle Soup, frosted cookies, enacted the Nativity and opened our PJ’s and books

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All ready for Santa to come in their Christmas PJ’s!

 

Christmas morning!

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Running down the stairs to see what Santa brought!
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Doc McStuffins Mobile Doctor Station! Just what she wanted!
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Super excited about her camera

After presents we went to church. The girls were all twinning in their black with red tights

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After church we went to Yia Yia’s house to open presents with cousins

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and after that we went to grandma’s house to open presents with those cousins!

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We went to clinic and Liv was in a great mood. She did great with port access and then we played Memory while she had her Pentam drip going.

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After we saw the Dr, we made our way back to the infusion area. When she stood up she immediately got really sick. I had forgotten to tell them that the last time we did Pentam she got really nauseous and threw up. I felt terrible! They immediately got her some Zofran and after about 20 mins she did a lot better.

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We had a Chick Fil A date afterward, her favorite!

 

Last night BYU gave tickets to all the Mac’s Gift Utah County cancer families. We got to go on the floor during half time. Liv was so excited and had this adorable smile on her face the whole time 🙂

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