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 ๐Ÿ™‚ I think they were practicing for their big first day ๐Ÿ˜‰IMG_8460

She got to meet her new cousin, Palmer. Liv LOVES babies and is so mothering ๐Ÿ™‚

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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 ๐Ÿ™‚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

Grandma’s birthday dinnerIMG_9190

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 ๐Ÿ™‚ 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 ๐Ÿ™‚ย 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 ๐Ÿ™‚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 ๐Ÿ˜ฆ 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 ๐Ÿ˜ฆ 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 ๐Ÿ™‚

 

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 togetherย 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 ๐Ÿ™‚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!ย 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 ๐Ÿ˜ฆ That explains why she had been falling asleep in the car so ย 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 ๐Ÿ™‚

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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 ๐Ÿ˜‰

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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 ๐Ÿ˜ฆ

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But then I tickled her and got her to laugh ๐Ÿ˜‰

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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 ๐Ÿ™‚

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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 ๐Ÿ™‚

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 ๐Ÿ™‚ 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 ๐Ÿ™‚

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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 ๐Ÿ™‚ 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 ๐Ÿ™‚ Maui got to the party while we were all eating. He was so awesome! Moana and Maui sat with Livvi while she ate ๐Ÿ™‚

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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 ๐Ÿ™‚

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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 ๐Ÿ˜‰

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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 ๐Ÿ˜‰ It was like she was seeing her long lost friends. It was pretty adorable ๐Ÿ™‚

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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 ๐Ÿ˜‰

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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 ๐Ÿ™‚

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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 ๐Ÿ™‚

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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 ๐Ÿ™‚

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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 ย 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 ๐Ÿ˜ฆ She spent the next two days feeling miserable and then it cleared up and she was back to normal ๐Ÿ™‚

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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 ๐Ÿ™‚

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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 ๐Ÿ™‚ 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 ๐Ÿ™‚ 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 ๐Ÿ™‚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 ๐Ÿ™‚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 ๐Ÿ™‚ย 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 ๐Ÿ™‚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 ๐Ÿ™‚

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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 ๐Ÿ™‚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!ย 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 wasย painful to see the difference in Livvi compared to other kids her age ๐Ÿ˜ฆ 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 ๐Ÿ™‚

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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 ๐Ÿ™‚

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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 soย 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. ย I know that I have to stop this. First of all, it isn’t healthyย 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 ๐Ÿ™‚

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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 ๐Ÿ™‚

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She is loving playing the piano still ๐Ÿ™‚

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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 birthdayย 

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 friendย 

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We had clinic today. The morning started out really rough. Liv had to fast because time she had to haveย 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 ๐Ÿ˜‰

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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 ๐Ÿ™‚
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Happy as can be eating Chick Fil A at her dad’s office ๐Ÿ™‚

Her ANC was all the way up to 3100 today ๐Ÿ˜ฆ 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 ๐Ÿ™‚ย 
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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 ๐Ÿ™‚
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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 timeย was last week and we were sad to see him go ๐Ÿ˜ฆ
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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 ๐Ÿ™‚
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She learned to tie her shoes thisย 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 drawย 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 theย 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 ofย 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 ๐Ÿ™‚ 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 ๐Ÿ™‚

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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 ๐Ÿ˜ฆ
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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 ๐Ÿ™‚

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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 ย 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 ๐Ÿ™‚IMG_9240IMG_9251

She couldn’t wait to show everyone at clinic that she lost her tooth ๐Ÿ™‚ She also couldn’t wait to show them her new Belle wig ๐Ÿ™‚

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 ๐Ÿ™‚ 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. ย Sheย alsoย 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.

Iย 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 herย 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 ๐Ÿ™‚
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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 ๐Ÿ™‚
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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 herย 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 ๐Ÿ™‚
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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 ๐Ÿ™‚

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 ๐Ÿ™‚

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 ๐Ÿ˜ฆ 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 ๐Ÿ™‚
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So proud of herself ๐Ÿ™‚
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Her hair is at a really cute stage right now!

Clinic was ย 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 ๐Ÿ™‚ 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 hisย way home. It was really fun ๐Ÿ™‚ 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 ๐Ÿ˜ฆ 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 ๐Ÿ™‚ 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 aย good range after Dr Afify increased her dose of 6MP to 1.5ย 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.ย 

Valentine’s Day:

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Liv loved getting all dressed up for V-Day!

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

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

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

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

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

 

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

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

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

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

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

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

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All hooked up to her pole

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

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

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

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

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

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

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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 ๐Ÿ™‚

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The next day was ย 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 ย 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 ๐Ÿ™‚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 ๐Ÿ™‚

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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. ย She and Street have really enjoyed building puzzles together ๐Ÿ™‚

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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 ๐Ÿ™‚ 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 ๐Ÿ™‚ They painted and made candy necklaces and played Musical Rainbows and ate lots and lots of treats ๐Ÿ™‚

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Three days later it was their actual birthday. Here areย Liv’sย 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 ๐Ÿ™‚ 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 ๐Ÿ™‚

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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 ๐Ÿ™‚

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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 ๐Ÿ™‚ Liv loves her cousin, Sage, and is very mothering to her ๐Ÿ™‚

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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 ๐Ÿ™‚

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We took the boys to get their haircut and Liv had fun sitting on the hippo and watching ๐Ÿ™‚ 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 ๐Ÿ™‚

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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 ๐Ÿ™‚

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