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 🙂

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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 😉

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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 😉 It was like she was seeing her long lost friends. It was pretty adorable 🙂

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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 😉

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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 🙂

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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 🙂

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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 🙂

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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  a room. That kind of freaked me out! They gave her Tylenol and got her IV Antibiotics running right away. Within a half hour she had perked up and was feeling so much better since she didn’t have any pain or a fever. We played with her sticker faces and play doh and watched movies while we waited for her ANC to come back. It finally came back and was at 1000 so we were able to go home. Yay! We got home at 2:30am and she woke up the next morning at 7:30 with a 102.5 fever still 😦 She spent the next two days feeling miserable and then it cleared up and she was back to normal 🙂

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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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