Make A Wish Trip, Day 2!

Day 2 we spent at Animal Kingdom! We absolutely loved this park! We originally thought we would only spend half a day at this park. It just didn’t seem like there was a whole lot to do. But once we got there we realized how amazing it was and we stayed the whole day. We even went back for more the next day!

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When we first got into the park, we had to stop and get a photo in front of the beautiful and incredible Tree of Life

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Then we made our way back to Africa to go on the Kilimanjaro Safaris. What a cool thing! Because we went there first thing in the morning, most of the animals were out and we got to see so much!

 

We planned to do Pandora next, but everything was closed in Pandora. We were SO bummed! That was basically the reason I even scheduled us to do Animal Kingdom. We decided to head to the other areas of the park and hoped it would open back up later.

We started heading over to Asia to do Expedition Everest. On the way, there was a photo op and the photographer was amazing. He was so so sweet to us and made the biggest deal about Liv. We got the cutest pictures of the kids and our family here.

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Expedition Everest was an AWESOME roller coaster and the kids loved it! The first few times Street and Daci would only ride it with their eyes closed. haha! They had watched YouTube videos before we left and knew that there was a scary Yeti at the end, and didn’t want to see it. Rick and I gave them such a hard time about it. Liv was our extreme daredevil of the trip and wanted to ride over and over again, and kept her eyes open the whole time. One the third time Daci and Street finally agreed to open their eyes, but Street had to plug his ears instead. Ha! Despite being nervous, they wanted to ride it over and over again. Rick and I had to put a stop to it after four times because we were so nauseous. haha! We have weak stomachs in our old age!

 

After Everest, we decided to take a breather and go see Finding Nemo the Musical. It felt great to get out of the heat and sit in some air conditioning, and the show was so darling! The kids loved it and kept saying they wished Stade could see it, since he loves Finding Nemo so much πŸ™‚

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After the show we grabbed some food at Restaurantasaurus. It was yummy! Disney does such a great job with Gluten Free options! You just have to know which restaurants have those options…luckily I did my research beforehand πŸ˜‰

When we finished lunch, we checked our app again and saw that Pandora was open! We were so excited! We made our way over there and had hours of fun. Pandora was breathtaking. Absolutely incredible the way they were able to make the scenery from the movie come to life.

The kids were obsessed with Flight of the Avatar. What an incredible ride! We were so lucky to have the Genie Pass that Make A Wish gave us. It allowed us to walk right up the fast pass line as often as we wanted. Even with the fast pass though, it was still the longest wait til we had of all the rides. We found out later that evening from a cute couple we met on the train that they had ridden the ride twice that day. Its all they got to do. They waited for four hours the first time, and three hours the next! This ride was mine and Rick’s favorite. We loved it! I think this one and Expedition Everest were tied for the kids favorite πŸ™‚

We rode Flight of the Avatar twice and then we headed over to see Festival of the Lion King. It was also amazing!

 

We went over to Dinosaur land and rode the ride Dinosaur. It was a fun one! It scared the kids a little bit. Liv of course was unphased and wanted to ride again but Daci and Street decided one time was enough and wanted to head back to Pandora πŸ™‚ We did a MUCH better job of keeping Liv in the stroller in between rides the whole day and she didn’t have any leg pain. Yay!

We had a little bit of time before the night show and the kids were begging to ride Avatar again so we headed over there and rode it once. When we came out it was raining! Darn it! We wanted to see the night show so bad! From the time we started walking to the exit, to when we actually got there, it went from a drizzle to a full blown storm! We were soaked! When we got back to our villa we took all the inserts out of our shoes and let them air out overnight πŸ™‚

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Make A Wish Trip, Travel and Day 1

We boarded the plane and the kids were SO excited to be flying to Florida! We had a short flight to Denver for a layover and then a longer flight to Florida. We colored and did homework for most of the flight. Poor Street wasn’t feeling well at all and I worried he would be miserable the whole trip. When we landed in Florida we were greeted by a Give Kids The World Volunteer. She was SO sweet and took us to get our rental car. When we got to the Village we found out that it is Christmas on Thursday nights in the Village! Santa was there and the kids got to talk to him and pick out a toy in his workshop! They were ecstatic about that! After we talked to Santa we went to eat dinner at The Gingerbread House. There were tons of teenage volunteers there that helped us get our food and drinks. We were just completely in awe by how amazing the village was and how it is run by such selfless people! After dinner we went over to the Ice Cream Shop. They have ice cream available all day at the Village!Β After our food we went to see our little home for the week. Our villa was adorable and so nice!

The next morning we got up bright and early, went to eat breakfast at The Gingerbread House, and then headed to Disney World! Make A Wish gave us three days of tickets to Disney Parks. Along with those tickets we got the Memory Maker Photo Pass! That means we got unlimited pictures, so we used the Park Photographers a lot!

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When we first got there, we took the traditional picture in front of the entrance. Right after our picture we were approached by a cast member and she asked if we would want to be the Grand Marshal’s for the Festival of Fantasy Parade later in the day! We were so surprised and the kids were so excited. She told us to meet her at 1:30pm and she would tell us what we needed to do.

We went to Adventureland first and rode the Magic Carpets. Liv had been dying to meet Princess Jasmine, and she had even colored a picture for her on the plane. After the Magic Carpets we went to do Big Thunder Mountain because Aladdin and Jasmine weren’t out yet. The kids LOVED BTM! My kids are thrill seekers, we discovered this when we went to Legoland this year. They LOVE roller coasters and want to ride them over and over again. This makes it a lot of fun for Rick and I! They rode BTM and then begged to go again. Luckily, Make A Wish also provided us with the “Genie Pass”, which allowed us to go right on every fast pass line, all day long. It was so great and allowed us to ride so many rides in one day! We rode BTM one more time, and then headed over to meet Aladdin and Jasmine. They were so sweet and Liv loved giving her the picture she colored. After that we went to do the Jungle Cruise and Peter Pan and then to get a Citrus Swirl, yum! There wasn’t much time before we had to meet for the Parade so we decided to go look at some shops on Main Street, but when we got to the castle we heard a show going on! I wish we had known about it, it was darling and we only caught about three mins of it 😦 Liv was so excited to see each character come out though! Rick held her up so she could see everything πŸ™‚

We went to meet the lady for the parade, but right around this time it got pretty hot and Liv was getting tired and mopey. When we got there they gave us special Grand Marshal Mickey Hats! There were two photographers there and they told us we would be getting the special treatment. They took a bunch of fun family pictures of us that turned out cute.

After that, Liv was so hot and tired and grouchy that we were taking pictures. Haha. It was kind of embarrassing because it was a really special thing that they were doing for us and I was trying really hard to cheer her up and explain how cool it was that we got to do this. The photographer captured a moment that I feel like describes our relationship since she was diagnosed with cancer. She gets sad a lot, I know that she feels terrible a lot of the time, I mean she is on chemo daily, so it kind of falls on me to try and boost her spirits. We have a lot of moments like this, where I have to get down on her level and remind her of things that make her happy.

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It was hard to get her cheered up, and I was so embarrassed that she was acting all put out, but then the car pulled up! She was so excited to be able to sit down and not be hot! haha! Once we were in the car, she perked up. They had us practice smiling and waving πŸ™‚ They said we would have to smile and wave for a long time and if our cheeks and arms didn’t hurt by the end of it, then we weren’t doing our jobs right πŸ˜‰

The parade started and they announced that the Roberts Family from Lehi, UT were the Grand Marshal’s of the Parade over the loud speaker. We waved and smiled for what felt like forever, but it was so much fun! We even had a family cheer out, “Yay, UTAH!” Once our car ride ended, our photographer took us back out on the main street and took a bunch more family pictures of us. We saw the family that was from Utah and they said they were from Orem πŸ™‚

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After we got our pictures taken, they took us over to a special VIP viewing area at the end of the parade route! Β A lot of the characters came over to give us hugs or high fives or waved at us from the top of their floats. It was so much fun! The kids were so happy and Liv was especially excited to see all of the princesses. It was so magical!

 

After the parade, our awesome photographer walked us over to Town Hall and told us to go see his good friend, Tinkerbell πŸ™‚ While we were waiting for him, he brought us one of our photos printed and signed by Minnie and Mickey Mouse. It is such a treasure!

We met Tinkerbell and the kids were so smitten by her πŸ™‚ When we exited, we left through a gift shop and of course Liv fell in love with a Tinkerbell costume and begged us to get it for her. We told her we would think about and then left to ride a bunch more rides. Around 2pm it started to rain really hard. We didn’t let it stop us though! We put on our ponchos and powered through! We did Buzz Lightyear and then Space Mountain, Which I was particularly excited about because it is my favorite. I hoped really hard that they would like it and that they wouldn’t be scared. They fell in love with it! They wanted to ride it over and over again! I think we rode it three times in a row and just kept walking right on it because it was raining so hard and people seemed to have retreated during the downpour. By the third time, the rain was letting up and the lines were getting long again so we rode it one more time and then headed back out πŸ™‚ After that we rode the Seven Dwarves Mine Train twice and then the Carousel and then The Little Mermaid. By that point, everyone was exhausted, but especially Livvi. She started to whimper and had tears in her eyes. We decided to call it a day and started walking back to the park entrance. We stopped at the gift shop on the way out and let the kids each pick something. Liv picked the Tinkerbell dress and shoes, Daci picked some pretty swarovski crystal Mickey earrings and Street picked some Toy Story figurines. By now, Liv was full on crying in pain. Her legs were hurting her SO badly. She was inconsolable. We had gotten a free stroller rental and used it the first part of the day, but she was so happy and doing so well that we didn’t really think we needed it. We accidentally left it at Town Hall when we went to see Tinkerbell and just decided not to go back for it. Hindsight, we definitely should have gone back for it. Her legs were hurting to bad at the end, and she couldn’t walk anymore. Rick carried her from the park entrance all the way down to the Monorail, which is definitely not an easy task. Haha. Then we had to wait for the shuttle in the pouring rain. Poor thing was just miserable. Other than her legs hurting at the end, we had an incredibly magical day though!

 

Maintenance, Month 11

Sept 5-Oct 5

September is Childhood Cancer Awareness Month, last year I had a profile picture made with Liv’s picture. Last year she was a little baldie, I can’t believe how much hair she has just one year later, after losing it all and growing it back in! We went to Kneader’s and bought elephant cookies, even though Liv and I couldn’t eat them, just to support Childhood Cancer Awareness πŸ™‚

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Waiting for carpool in the morning, Liv is absolutely loving school and making new friends!IMG_9780

Soccer started and Liv got to play for the first time! Her first game was SO adorable! She was so excited! She ran around, chasing the ball, with the biggest grin on her face and every time it was a dead ball she would turn around and give us a big thumbs up. Haha. We really worried about how she would do in sports with her low muscle tone. She is definitely slower and weaker, but we were pleasantly surprised with how well she kept up with the group! She pushed herself hard, and we were so proud πŸ™‚ She is the tallest on the team. She towers over all of those boys πŸ™‚

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Just cuz she’s cute and loves to wear cat ears πŸ™‚IMG_9962

At her next game we got her hair in her very first pony tail!!IMG_0049IMG_0050IMG_0051 (1)

I had my friend take updated pictures of my kids for my wall. The last professional pictures we had done of Liv she was bald πŸ™‚RobertsKiddos_15RobertsKiddos_31RobertsKiddos_32

Primary Program Sunday! They all did such a great job πŸ™‚IMG_0028 (1)

She loves her baby brother. She takes such good care of him πŸ™‚IMG_0054

Another cute kitty ear picture πŸ™‚IMG_0074 (3)

We went on Liv’s Make A Wish trip to Florida! It was incredible! I’m going to do a separate post of that because I have five million pictures. But here is a picture of the night we got back. The kids were so excited to be back in our own house and to be reunited with Stade πŸ™‚

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The morning after we got back we were thrown back into real life. Liv had to go to her monthly clinic appointment. She was pretty bummed to be there after a week of non stop fun. She was pretty sad for most of it 😦 I felt terrible because I realized half way to Primary’s that I forgot her numbing cream for her port and she would have to get the freezy spray, which she HATES! So port access was a bummer, and then to top it all off, the port wouldn’t draw so we had to let TPA sit in the line. That added another hour to our already long visits 😦

Once they got her labs back, they told me that her ANC is low 😦 She was at 600, which means she was borderline halting chemo (500) so they wanted to recheck her a week later to see if it was maybe just the little cold virus she was fighting that was causing her counts to be low.

ANC 600, Hemoglobin 10.2, WBC 1.1, Hematocrit 30.4, Platelets 169000

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Maintenance Month 10

We finished up the summer with some fun activities! Here’s what we were up to from Aug 8th-Sept 5th!

Making and decorating cupcakes!IMG_8278

Meet the Teacher! The twins were SO excited! I thought Liv would be shy and nervous but she walked right up to her teacher! I was so proud!IMG_8319

Farm Country and ice cream with cousins!IMG_8346IMG_8450

Visiting Yia Yia in her classroom before school started. They all immediately sat down and started coloring πŸ™‚ I think they were practicing for their big first day πŸ˜‰IMG_8460

She got to meet her new cousin, Palmer. Liv LOVES babies and is so mothering πŸ™‚

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Traverse Mountain Pool with cousins and then Pizza after!IMG_8602IMG_8590 (1)

We watched the solar eclipse with our special glasses! The kids were fascinated by it and got so into it! After the eclipse passed over us, they watched it happen on the internet over the rest of the country. They loved it!IMG_8661IMG_8669IMG_8728IMG_8732IMG_8747 (2)

Half way through the month we went to AF Hospital to IV Therapy to have her counts checked. She was SO brave and loved doing all the flushes herself πŸ™‚IMG_8785 (1)

 

Dinosaur Museum with cousins!IMG_8863IMG_8870IMG_8874IMG_8883

Splash Pad with cousins and then surprised Grandma at her new work for her birthday!IMG_9038IMG_9096IMG_9101IMG_9105

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The day FINALLY came! First day of Kindergarten!!! They were both SO excited! They looked adorable and so grown up. I worried Liv would have a hard time leaving me the first day but she hopped right into line and started going in when the teacher called them. Right at the last second she turned around, ran back to me, gave me a big hug, and said “bye, mom! love you!” and turned back around and ran in the room. I was so proud of her πŸ™‚ Notice in the pictures she is by far the tallest kid in her class. Haha.

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The circus that is taking them all to CostcoIMG_9256

Liv had a playdate with two of her friends after school one day. They love to do smoothie challenges and create their very own concoction πŸ™‚Β IMG_9273IMG_9275

When I dropped the kids off for carpool, I nearly died at the cuteness. Daci walked them both down to the kindergarten area while holding their hands πŸ™‚IMG_9279

First day back at piano! Daci is taking lessons as well this year. Their first lesson they did together to learn what they would be doing over the year.IMG_9298IMG_9317IMG_9320

Just a few randoms:

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Liv loves to make green smoothies
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Helping me make frosting for sugar cookies. They had to lick the beaters!

Liv had her very first soccer practice! Street was SO excited for her. He kept saying, “I can’t believe you’re having your first practice today, Liv!” over and over again all day long. At the end of practice he sweetly said, “Congratulations, Liv.” Ha!

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On Labor Day we went to watch Daddy play in a Pickleball Tournament and then went to Hill Air Force Base Museum. It was fun! Then we went to see their Great, great Grandma on the way home. It was so fun to see her!

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The next day was clinic. She woke up in the middle of the night complaining that her throat hurt, and then that morning she complained of it too. She got to go to the first part of school and then I went to get her about an hour before school got out. Liv saw me and broke down bawling. She said she had just seen Daci out at recess and it made her miss her. She cried and cried. I wondered if it was more that she missed Daci AND that she wasn’t feeling great AND that she had to go to clinic all combined 😦 I asked her if she wanted to grab a Robbery on the way out for her lunch and she was happy about that. But once we ordered and sat down to wait, she started crying again 😦 I worried clinic would go terribly, but she was pretty happy during the whole thing. Yay! Her counts were a little bit high (ANC was around 3000) but Dr Verma thought that it was because she was fighting a little bug and wasn’t worried at all.

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The next day we went to Kneaders to buy elephant cookies to support pediatric cancer research. September is Childhood Cancer Awareness month and 100% of the proceeds from these cookies go directly to pediatric research. Did you know that only 4% of all funds raised for cancer research go to pediatric research? Our kids deserve more than four!

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Maintenance Month 9

 

Ah! I just realized that I never posted last month, and now its almost time for clinic again. Haha. Well July 11-August 8th was a pretty fun and low key month. Here were some of our goings-ons πŸ™‚

 

Watching Street play T-Ball

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Street and Liv did swimming lessons and then we would watch Daci’s swimming lessons

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Backyard fun with PapouIMG_6642

Lots of swimming at the Traverse Mountain PoolIMG_7922IMG_7941

Our Chicago friends came to town and we all played at the Splash Pad togetherΒ IMG_7956IMG_7955

Liv is the BEST big sister to Stade. She is so sweet to him!IMG_7524

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Physical TherapyIMG_7153IMG_7157IMG_7164

Doing PT exercises at home….the other kids love to join in and make it a competition πŸ™‚IMG_7876 (1)

Liv has had a rash for months. We tried hydrocortisone cream and it didn’t improve so Dr. Afify wanted us to see the Pediatric Dermatologist. We had an appt and she said it was just eczema but bad enough that hydrocortisone wouldn’t clear it up. She gave us a prescription and it cleared right up!Β IMG_7715IMG_7716IMG_7787

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I know this pic is blurry but I love it because it shows her adorable TRUE smile

After the Dermatologist appt we walked over to clinic to get a blood draw. They wanted to check her counts after being off of chemo for two weeks. She was still low 😦 That explains why she had been falling asleep in the car so  much still. They kept her off chemo until her counts could come back up. I have to admit, it was really nice not having to wake her up for her chemo pill each night. Haha. But a part of me was really stressed that she was going without the medicine that was keeping her body healthy.

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Liv’s cousin had a birthday party. Liv just loves Sage and acts like her mommy πŸ™‚

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On August 8th we went to clinic bright and early because it was an LP day. I had to get a pic of Liv getting her EMLA (numbing cream) on and the glad press and seal that we put over it to keep it in place.

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While we waited we played Memory….of course πŸ˜‰

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Getting her blood drawn….. We were so happy to find out that her counts were back up!

ANC 2100

WBC 4.1

Hemoglobin 11.6

Hematocrit 34.7

Platelets 265,000

They started her back up on her chemo. Yay!

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Hanging out while hooked up to her meds and waiting for the Dr.

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She got kinda pouty because she didn’t want to get an LP 😦

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But then I tickled her and got her to laugh πŸ˜‰

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She was amazing going to sleep this time. She just crawled up on the bed, buried her face in my chest and waited for the meds to knock her out. No crying, no whimpering. Sweet girl. She woke up happy as a clam and immediately asked the nurses for potato chips. ha!

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Her lunch request on the way home was Freddy’s πŸ™‚

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Wish Granting Party!

We were so incredibly blessed to have a giant Wish Granting Party thrown for Livvi by ZAGG and Make A Wish Utah!

I tried really hard to keep the whole thing a secret from the kids, I told them there was a big surprise happening the next day and that that was all I was going to say about it. And then a few seconds later I slipped and said the word “party”. Duh! Haha. But they didn’t know what the party was for, so that was good πŸ™‚

About an hour before we were going to leave for the party there was a knock on the door and there was Moana waiting to see Livvi! She brought Liv a special dress and told her she should wear it to the party πŸ™‚ Liv was so beyond shy with her at the door, but you could tell she was so excited! Stade on the other hand, was not shy at all. He kept yelling “HI!” at her. Haha. As soon as Moana left, Liv ran upstairs and put her new dress on. She looked beautiful πŸ™‚

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Then, another surprise! A limo showed up to take us to the big party! The kids were so excited!!

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When we got to ZAGG’s headquarters we were greeted by Moana and a giant Balloon arch. Moana gave Liv her very own Heart of Tafiti and led her to the elevator to take her up to her party. We all got Lei’s and then headed to the big party room.

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When we got to the big room, Moana gave Livvi her very own Pua and Hey Hey! She was beyond excited about those πŸ™‚ Then ZAGG presented Liv with a beautiful flower crown!

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They catered in a delicious dinner of Costa Vida (all Gluten Free, of course) and cupcakes from the Sweet Tooth Fairy! They made a big Island of Tafiti made of Gluten Free Sweet Tooth Fairy cupcakes πŸ™‚ Maui got to the party while we were all eating. He was so awesome! Moana and Maui sat with Livvi while she ate πŸ™‚

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After dinner we had a really fun program. Moana did a beautiful Hula dance for us and then we split into groups of boys and girls. Moana taught us a Hula and the boys learned the Haka from Maui, then we danced for each other!

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After our dances, Moana told us stories of Maui and Maui acted them out. The kids loved it! Then they played pass the coconut with Maui.

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Moana’s cousin came to the party to do face painting. I have never seen a more incredible face painter! She was awesome! She did a sweet painting of baby Moana on Liv’s cheeks and Pua on her arm. Sage got a Maui shark head, Daci got another baby Moana one and Street got the kakamora’s (sp?). Haha.

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After the fun, ZAGG presented Liv with a fun gift and then gave all of her siblings their own presents. Then they called all the cousins up and gave them fun gifts as well! Then our amazing wish granter, Karen, got up and read Liv’s wish proclamation and told Liv that her wish of Disney World had been granted! We get to go to Disney World Sept 13th-19th! After the wish granting was announced, Moana told us the ocean was calling her home and she had to leave. We all got pictures with her and Maui before they left us. They were so incredible. Moana was the sweetest and took such good care of Liv. Liv fell in love with her! At the end of the night I caught Liv running around in circles and singing to Moana. She was so happy and carefree. We are so so grateful for all those involved in making this such a special night for Livvi and our family!

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Liv with her siblings and most of her cousins
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Cousins!
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Yia Yia and Papou
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Liv and Grandma
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Great Grandma and Grandpa
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Liv with her wish granter, Karen
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Street and Maui, so serious!
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Love our Liv!

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After the party we invited the cousins to ride home with us in the limo!

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Maintenance, Month 8

June 13th-July 11th

We got to California and the first things the kids wanted to do was go down to the beach. The tide was high so we just stayed right up next to the rocks and watched the waves come in and the sunset. The kids loved it!

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The kids were up bright and early the next morning and wanted to head right out to the beach. For the first few days we had low tide until about noon each day, and it was perfect! The kids loved to look for crabs, dig for seashells and boogie board. By the end of the trip they were all catching waves!

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We found an amazing taco place in Encinitas called The Taco Stand. YUM! After we ate there the first night we went to get ice cream at Handel’s. Double Yum!

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After the beach each morning we would come in and just relax in the beach house. One of the things the kids loved doing was building domino’s trains with Rick and then recording them getting knocked down in slow motion πŸ™‚

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Sunday was Father’s Day, we drove to Sprinkle’s and got cupcakes and then took them so the San Diego Temple grounds. It was so beautiful and the kids loved walking around, singing “I love to see the temple”. playing duck, duck, goose, and tackling each other πŸ˜‰

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On Monday we went to Legoland! It was SUCH a blast! We had Stade for the first three hours and then Rick’s parents took him back to the beach house for us while we stayed until closing with the three big kids! They had so much fun and it was such a magical day! They were all so brave and loved riding the big roller coasters. I think we rode the five big rides at least four times each. At the end we went over to Heartlake City in Friends Legoland. When Liv was first diagnosed she discovered the Friends Lego Show and became obsessed. For a long time thats all she would watch at clinic and it kept her somewhat happy. I am not a huge fan of the show, I think its pretty dumb, but seeing Liv freak out when she saw the characters made me love it just a little bit πŸ˜‰ It was like she was seeing her long lost friends. It was pretty adorable πŸ™‚

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Of course we had to do another trip to The Taco Stand and Handel’s, this time with the whole crew!

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Hot tubbing after a fun beach day

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Aunt Sophie painting nails before our big family pictures

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Family Pictures on Ponto Beach by the amazing Brittney of Reality and Retrospect

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After family pictures all the kids started chasing waves. After a few minutes of just running away from the waves, they all started getting closer and closer into the water until before too long they were drenched from head to foot. Haha. They were all great for family pictures, so we let it slide πŸ˜‰

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I’m including this pic because I need to document her infamous pout. This girl knows how to work a pout! Anytime she doesn’t get what she wants she first does this look away, then her lips curl into this giant frown, and then if that doesn’t get her what she wants she starts the full on wail. Ugh! I have to say, its pretty hard to deal with πŸ™‚

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Liv is the BEST big cousin. She loves to “mother” the little cousins and smother them. Luckily Claire and Noah didn’t mind πŸ™‚

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When we got back from California, I had gum surgery the next day. My mom and dad took turns hanging out with the kids while I napped.

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Back at physical therapy. They are working on coordination a lot with her right now. So she does a lot of throwing balls and balancing along with her strength exercises.

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Yia yia has been teaching the twins how to read this summer. They are doing a great job!

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The 4th of July was so much fun! In the morning we went to Yia Yia and Papou’s for a brunch and a little carnival that Daci put on. The kids had so much fun doing corn hole, shooting hoops, potato sack races, and winning prizes πŸ™‚

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In the evening we went to grandma and grandpa’s for dinner, kiddie pool fun and fireworks!

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The next morning Liv had physical therapy and she was pretty mopey, whiny and low energy. I was getting kind of frustrated with her because she wasn’t trying her hardest. We got home and about an hour later she started fevering. She hovered around 100 for a few hrs so right before bed I gave her a bath and put a cool compress on her head. Daci was so sweet and was rubbing her legs and singing to her in bed. She had a severe headache and was crying so hard over it. I couldn’t give her Tylenol because I couldn’t mask her fever so I gave her Oxy and she fell asleep. I checked her temperature every 30 minutes and she was back down to 99 but at 10:30pm I checked her one last time before we went to bed and she was at 102.5! We called Primary Children’s and they wanted her in immediately.

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When we got to Primary’s they took her vitals and said she had “shock vitals” which means she had a high heart rate and high temperature. They immediately talked into their little intercom thing and said “we have a red patient” and then immediately walked us back to Β a room. That kind of freaked me out! They gave her Tylenol and got her IV Antibiotics running right away. Within a half hour she had perked up and was feeling so much better since she didn’t have any pain or a fever. We played with her sticker faces and play doh and watched movies while we waited for her ANC to come back. It finally came back and was at 1000 so we were able to go home. Yay! We got home at 2:30am and she woke up the next morning at 7:30 with a 102.5 fever still 😦 She spent the next two days feeling miserable and then it cleared up and she was back to normal πŸ™‚

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Over the weekend we went on a little outing to Scheel’s and rode the Ferris Wheel

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When we got home Rick and I did yard work and the kids surprised us with a little snack station. Who could resist pretzels, cotton candy and parmesan cheese whips? Haha!

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The next day was clinic. Liv fell asleep on the way up. I remember thinking that it was weird that she had been falling asleep in the car so much lately. When we got there, we did the regular routine. It actually went SO FAST this time! There was NO traffic (super rare) and we got there about fifteen mins early and there was not one patient there! They got us right back and hooked up to the Pentamidine all before our appt was even supposed to start! Dr Afify came in and said that her counts were really low. Her ANC was down to 200, her hemoglobin was at 8.5, Platelets at 122,000, Hematocrit at 25.1 and her WBC at .9. Her Platelets have never been that low, even when she was first diagnosed. Super weird. Dr Afify said they are just having a hard time finding the correct dose of the 6MP for her. We found out in the very beginning of treatment that she was positive for a gene that metabolizes the 6MP faster. There aren’t very many patients that have it, but its not super uncommon because there are enough of them that they test everyone for this gene before the start. So for kids with this gene, they give them 75% of the normal dose. They started Liv out with this dose in the beginning of Maintenance and it tanked her to zero, so then they cut back on that dosage and then her counts went way too high. Each month they have adjusted it to get her in the desired ANC range (750-1500) and each time its either too high or too low. Because she is so low right now they halted chemo for two weeks and then they want to see where her counts are at after two weeks of no chemo. We will go in for a blood draw, and if they are ok then we will start up again.

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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 πŸ™‚

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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 πŸ™‚ 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 πŸ™‚ 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 πŸ™‚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 πŸ™‚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 πŸ™‚Β 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 πŸ™‚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 πŸ™‚

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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 πŸ™‚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!Β 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 wasΒ 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 πŸ™‚

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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 πŸ™‚

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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 soΒ 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. Β I know that I have to stop this. First of all, it isn’t healthyΒ 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 πŸ™‚

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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 πŸ™‚

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She is loving playing the piano still πŸ™‚

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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 birthdayΒ 

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 friendΒ 

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We had clinic today. The morning started out really rough. Liv had to fast because time she had to haveΒ 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 πŸ˜‰

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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 πŸ™‚
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Happy as can be eating Chick Fil A at her dad’s office πŸ™‚

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 πŸ™‚Β 
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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 πŸ™‚
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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 timeΒ 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 πŸ™‚
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She learned to tie her shoes thisΒ 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 drawΒ 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 theΒ 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 ofΒ 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 πŸ™‚ 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 πŸ™‚

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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 πŸ™‚

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Easter Sunday:

Version 2

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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 Β 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 πŸ™‚IMG_9240IMG_9251

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

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 πŸ™‚ 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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