First Month of Maintenance

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

 

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

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

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

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

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

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

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Our traditional ornament opening from Grandma.

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

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

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

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

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

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

Her counts

ANC 2300

Hemoglobin 11.8

Hematocrit 35

Platelets 320,000

WBC 3.2

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

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

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

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

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

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

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

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

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

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

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

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Just because I think she looks so beautiful in this pic

 

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

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

 

Christmas morning!

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

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

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

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

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

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

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

 

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

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