Maintenance Month 5

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

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

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

Some fun activities she has been up to:

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

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

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

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

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

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

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

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The blossoms were so gorgeous this week!

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

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They got a lot of loot!

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

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

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

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

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Easter Sunday:

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  a lot of former BYU players there and the turn out was amazing! They made Liv feel so special all night. She got to hang out with Cosmo and the BYU cheerleaders, she was given an incredible Minnie Mouse cake made by an 11 year old student (because her wish is to go to Disney World), and she got to get lifted up by some BYU players and make a basket! It was such a special night for Make A Wish and we were honored to be a part of it!

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

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

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

ANC 1100

WBC 2.5

Hemoglobin 10.5

Hematocrit 31.5

Platelets 262,000IMG_9202IMG_9207IMG_9219IMG_9237IMG_9239

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

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