Maintenance, Month 17

Feb 21-March 19th

On February 27th we had Liv’s Star Raising Ceremony. Every Wish Kid gets to raise their star to the ceiling to join all the other Wish Kids’ stars once they return from their wish. It was such a sweet experience. Both sides of our families came to celebrate Liv and to see her raise her star.

First, Liv got to take everyone on a little tour of the Wishing Place. She showed them the Wishing Tower and she sent her wish away the same way that she made her wish.

We all had Root Beer floats and watched a slideshow of Liv’s pictures from the trip and then they took us all out to the hall to raise her star. They played the song “When You Wish Upon A Star” and it was very quiet in the room as Liv raised the star up. Afterward a bunch of the kids started crying. It was a spiritual moment and emotions were very close to the surface. There was lots of crying and hugging from all of our families afterward., It was a great night and it made the end of her cancer journey feel that much closer.

 

Liv’s Warts Progression:

  1. Feb 21st when they told us to stop treatment. 2. We started the treatment back up on March 6th and within 5 days it looked like this. They were starting to turn black! 3. Two days later some of them started falling off 4. Within 7 days of starting treatment back up all of them had fallen off!
  2. She was SO happy! It was a lot less painful for her to walk!

 

Below Pictures:

  1. On March 5th I took Liv into IV Therapy at AF Hospital. Her port wouldn’t draw blood the first time, they tried and tried and couldn’t get it to work so they decided to do TPA. We waited the 30 minutes and it still wouldn’t draw 😦 They had to re-poke her, but by then her numbing cream had worn off. The poor thing felt the big needle go in and it hurt her so bad. My heart broke for her!
  2. Liv got sick and had two days at home. She and Stade had fun making cookies together.
  3. All my kids got an annoying virus that caused sores on the roof of their mouth and tonsils.
  4. Liv has been wanting to be able to cross her eyes. She practiced for a few days and finally got it. She was so proud! haha
  5. On Friday, the day before St. Patrick’s Day Liv wanted to wear the big green bow in her hair that my friend made for her the year she was bald for St. Patrick’s Day. She’s also a really good little reader!
  6. St Patrick’s Day the kids were excited to see that the Leprechaun brought Lucky Charms, gold coins and green apple rings. He also escaped their tricky traps but left them some gold coins for consolation πŸ™‚

On March 19th we had clinic. Liv’s port has been giving us problems for months now. We have had to do TPA every month for a long time. It always adds 30-45 mins to our already long clinic. Well this time, the port wouldn’t draw again, we tried for about 20 mins. We put the TPA in, but it still wouldn’t work after 30 mins. After an hr they tried again and it finally worked.

Next Clinic is Liv’s last Lumbar Puncture. Most patients are offered the option of getting the port removed on that day since they are already going under anesthesia, then they would just do their last clinic of chemo through an IV. Unfortunately Liv still has four more clinics after next time that she will have to get an hr and a half infusion, due to an allergy. So, we were all debating on if we should remove the port next time. But after how badly the port performed this time, her whole team of nurses and doctors agreed that it would be best to remove it next time. We have gotten everything we can out of it, and at this point its just causing more problems than helping. So for the next few months she will be doing everything through an IV in her hand.

Once we finally got the port to draw labs, two hours after we got there, the nurses were able to start her on her Pentamadine and then do her Vincristine Chemo. It was Β a long day, but she was pretty happy. We got to have our favorite nurses, so that made it a little easier πŸ™‚

Counts:

ANC 4700, WBC 5.9, Hematocrit 35, Hemoglobin 12, PlateletsΒ Β 248,000

Advertisements

Maintenance, Month 16

Jan 23rd-Feb 20th

This was a good month! A few random pics below:

  1. Dentist appointments 2. I volunteer in the twins classroom once a week and it is so fun to see what good students they are! 3. Liv loves to steal my phone and take selfies πŸ™‚ 4. Snuggles with cousin Palmer! 5. Liv loves to do her makeup. She has had a lot of fun with her makeup kit that she got for her birthday πŸ™‚ 6. We went to Aunt Sophie’s baby shower and the girls loved handing her her presents 7. Super Bowl Sunday! 8. She is so so cute with Stade. She smothers him to death and sometimes he can’t stand to be with her, but we all know its out of love πŸ™‚ 9. She loves to bake with me and lately Stade has wanted to join 10. Scooters with Stade! 11. Daci’s birthday party

These were her warts on Jan 24th after doing two weeks of Oregano oil and Apple Cider Vinegar. We had an appt with a pediatric dermatologist look at her and she felt that we should switch to a compound cream and see how it would do for her.

After almost 2 weeks on the compound cream. Sorry super gross, I feel so bad for her! She is really struggling with walking.

IMG_0832

One of my friends is a cake decorator and she contacted me and asked if she could make a cake for Liv. So Sweet! She even made it Gluten Free for her! Liv LOVES baking and she loves Moana, so this was the perfect gift for her!

We had a fun Valentine’s Day! I volunteered in the twins’ class party and ran a cake decorating station. After school we had a fun dinner and they opened presents from us.

 

Clinic was on Feb 20th. It was long….again. Haha. Her port wouldn’t draw…..again. Pharmacy didn’t order her Pentamidine….again. We waited around for almost two hrs before the meds even got there. She got really sleepy after they gave her the Benadryl so she just hung out in her chair and watched her iPad.

The NP Dayna looked at her warts and was very concerned with the open wounds that had developed on her feet. It was killing the warts, but also killing the healthy skin and there were big open wounds that were at risk of infection. She had Dr. Afify come look at it and she felt the same way. A little while later her blood counts came back as very low (ANC was 400, below 500 is when they stop treatment) and they decided they wanted to halt treatment, both the cancer treatment and the warts treatment for two weeks until her counts could bounce back.

ANC 400 WBC 1.0, Hemoglobin 11.2, Hematocrit 32.9, Platelets 162,000

Maintenance, Month 15

Dec 28th-Jan 22

We did some fun activities at the beginning of this month! We went to see Star Wars as a family. Liv made sure to bring her hand sanitizer and hook it to her belt πŸ˜‰ We went to the Dinosaur Museum with cousins and to the pop up Harry Potter World at the mall with friends. Liv also had some play dates with her friends and lost her fifth tooth! Five teeth before she even turned 6!

 

The second half of the month was full of yucky sickies 😦 Liv got pink eye and an ear infection. Street and Dac also got pink eye and Stade got an ear infection the same time as Liv. Both Liv and Stade couldn’t kick their ear infections and we were in the doctor every ten days with new pain after they finished their antibiotics. Boo!

Liv had a wart start a few months ago on the bottom of her foot. I showed her oncologist and she thought that we should just leave it be. She said warts are a result of a low immune system and very common in cancer kids. She hoped that it would resolve itself. Well, Liv started limping a few weeks ago. I asked her what was wrong and she showed me her foot. The wart had spread to a TON of new warts that were building up on top of each other 😦 It was so sad! We got right into a dermatologist and she was nervous about freezing or burning them off because of how many there are and because liv’s immune system is low and she worried about infection so she recommended we do Oregano oil at night and Apple Cider Vinegar on them in the morning. We did that for a week, we saw a little bit of change, but it just didn’t seem to be happening fast enough and she was in so much pain so at clinic we brought it up to Dr Afify and she suggested we see the pediatric dermatologist at Primary’s. She said she’s sure that that works for normal people, but cancer warts are a whole different beast. They are VERY hard to get rid of.

On Jan 19th it was the twins’ birthday! They were so excited to take treats to school and present their All About Me posters. After school I took them on a Swig Date too. That night we met dad at Summit Inn Pizza for a birthday dinner.

 

We had a “Cool Cats” family party on the 20th because Liv’s favorite animal is a cat and Street’s is a tiger. It was a lot of fun!!

 

Six Years Old!

Clinic was on Jan 22nd and Liv was such a trooper. It was an LP day and a suuuuuper long day. Β We left the house at 7am and got home at almost 5pm! I had to wear a mask the whole time because I had a cough. When we got there, her port wouldn’t draw. Ugh! I just need to prepare myself that it won’t draw. It has happened every time for at least the last six months, if not longer. So we played Go Fish while we waited for 30 minutes for the line to draw. Then Dayna came in to talk to us and we told her about Liv’s warts. Then Dr. Afify came in and we went through it all with her too. She felt that we should probably call the Primary’s dermatologist and see what her opinion of them were. We finally got labs drawn, but there wasn’t enough time to do the chemo and the Pentam before Liv had to be down to the CPC for her LP so they had us go down there and then said to come back up for her meds after. Boo! Thats always a huge bummer when we have to go back after she’s been put to sleep. In the CPC waiting room Liv played play doh until they finally came back to get us. She was such a champ going to sleep! I went into a coughing fit as soon as she fell asleep and I had to get out of the room quickly, but luckily I was there snuggling her until she actually fell asleep. When she woke up I had her potato chips for her and she was so excited πŸ™‚ We went back up to clinic and settled in for a few hours. They gave her her Benadryl and ZOfran and then started the Pentam drip. Once she was all situated I went down to get us both lunch from the cafeteria. We hung out and she sleepily watched Netflix while I scrapbooked πŸ™‚ It seriously went so great and I was SO proud of her! We have really been buckling down on her behavior at home. She is such a sweet girl but she does have a problem with moaning/whining/pouting/tantrum throwing when she doesn’t get what she wants or when things don’t go her way. I could tell she was really unhappy a few times at clinic, but she never let her behavior get out of control and I was so proud of her. She’s growing up! Maybe its because she turned six 3 days before πŸ˜‰

Maintenance, Month 14

Nov 28th-Dec 27th

This month was full of fun, festive activities! First up was decorating the house for Christmas. I love this picture of Liv and Stade snuggled up on the couch with Christmas blankies and books

IMG_5966

Millie’s Princess Foundation Christmas Party

Alpine Living Nativity. It was unseasonably warm and I’m so glad because it made it so much easier to enjoy it. It was beautiful and when we got to the manger scene I was so emotional.

We got together with my high school friends and Liv was all over the babies. She LOVES babies! Half the time she smothers them to death, but she is really cute with them πŸ™‚

Traditional Gingerbread Houses at Yia Yia’s with cousins. Liv was really into it and loved helping her cousin Claire with hers too.

Mac’s Gift Party. The first night the parents got to go and pick out presents for each of their kids and then the second night was the family party. BYU Basketball was there to play games with the kids, a bunch of characters were there for pictures and then we got to go meet Santa and each kid got to go pick out a present all on their own. Its fun to see what they walk out of the room with when we aren’t there to help guide them in their choices. haha

The twins got to sing in the Christmas Sing at school this year and they were so adorable!

On Christmas Adam we have a fun dinner at Yia Yia’s house and they exchanged their cousin gifts. Claire and Liv were so cute and excited about the gifts they got each other. We also had a little talent show were Liv played “Jolly Old St Nicholas” on the piano, and all the kids sang a song together while Yia Yia played the piano

Christmas Eve we had at our house with Grandma’s family. We had our traditional Chicken Noodle Soup, frosted sugar cookies, acted out the nativity, had a talent show, and opened pj’s and books

They finished the night watching out the window for Santa’s sleigh πŸ™‚

Christmas Morning was so magical! Liv was so excited about all of her presents. She got some stuff for her Wellie Wisher, a hairstyle Barbie, a style head, some baby hatchimals, and Santa took her Honey back to the North Pole and had his elves fix it up good as new πŸ™‚

We went to Yia Yia’s house for brunch and to open presents. Liv got a cute wagon for her Wellie Wisher

Later that evening we went to Grandma’s for dinner and present opening there

On Dec 27th, Liv had clinic. Daci was home for Christmas Break and begged me to let her come with. Im so glad I had her come, because it was a LOOOOOONG day! We got there and the waiting room was jam packed with patients. I guess the office was only open for two days that week and they had to cram all the patients into those two days. On top of that, her port didn’t draw the first time. Ugh! SOOOO frustrating! So she put TPA in the line and we waited about a half hour. When they came back in it drew, but the nurse had bad news…the pharmacy didn’t even have an order for Liv’s meds. NOOOOO! I knew with how busy they were that day that it would take hours to get the meds up to us, then we still had an hour and a half infusion. Daci and Liv and I played games for a while, then moved to the back and watched a show. The meds finally came and they gave her her benadryl so she wouldn’t have a reaction to the Pentam this time. Within five mins, Liv was sooo tired and could barely keep her eyes open. I went down to the cafeteria to get dinner for all of us. I came back and we ate and chilled for the rest of the time. We were there 6.5 hrs that day!

Maintenance, Month 13

This month started off with Halloween! I was so glad we got clinic out of the way before her big day. She dressed up as Joy, and we were an Inside Out family! She played the part so well πŸ™‚ She had so much fun going to school and having a class party and doing the Costume Parade at the end of the day. After school we went to her cousin’s house to have taco soup and then we went to Grandma’s house to trick or treat with her other cousins. Such a fun night!

Over the next two weeks we tried doing stretches every night, to help relieve her back pain, but it just wasn’t getting any better. She would lay on the couch for hours at a time complaining of her back and tummy 😦 We decided to get an X-ray of her abdomen. On Nov 8th I took her in for her x-ray. They found that she had a lot of compacted stool in her intestines. Before we left the hospital Liv and I realized we were twinners and had to snap a picture in the bathroom. Haha!

Over the next few days we did Exlax every day and Miralax twice a day. I had to monitor her stools to see if they were getting any softer. For the first few days she still wasn’t even going. I couldn’t believe that with all that Miralax and Exlax, she was still having a hard time passing stool. Over the next week she was starting to get it out, but I was still surprised that it wasn’t more than it was. However, even though it was just a little bit at a time, her back pain and tummy pain started to ease up! YAY! We had finally figured it out and we were so relieved that it wasn’t anything more serious than that.

We had a sleepover with cousins one night! The kids had a blast playing, watching shows and sleeping on the floor in the basement all together.

Half way through the month we had to go get her blood checked to see where her counts were at. She is so great when we go to AF IV Therapy!

On the 21st she lost her first top tooth, third overall. She made a whole cute little room for the tooth fairy, complete with snacks πŸ™‚

We had Pedersen family pictures taken the day before Thanksgiving. Liv loved snuggling baby Palmer, even though Palmer didn’t really want to be snuggled. Haha.

For Thanksgiving we went to a church with my Grandpa Pedersen’s whole big side. It was fun. The kids loved playing basketball and running around the gym with the cousins. Β We finished the night with riding in the trailer pulled by Grandpa P’s tractor. I loved that my kids got to experience our favorite thing that I did growing up!

The last day of our break we went to the Children’s Museum as a family and then met Yia Yia and Papou for dinner πŸ™‚

IMG_5584

On Sunday after Thanksgiving we decorated our tree!

I walked in on Street and Liv sitting in bed reading a book together one night and it melted my heart. They have kind of grown apart in interests and friends this year. Not that they don’t love each other still, but they aren’t as close as they used to be. So it was a fun sight to see πŸ™‚

IMG_5879

Nov 27: Clinic

Clinic did NOT go well this month. Haha. It was super rough. First of all her appt was at 3:30pm. Super late in the afternoon. I think they forgot that she isn’t a regular in and out maintenance patient. She has to do the Pentam because of her Septra allergy, so that makes the appointment much longer than a regular Maintenance patient. We got there and her port wouldn’t draw. They tried for a while and couldn’t get the blood to come, so they ordered the TPA. I was so frustrated. That darn TPA just makes our appt so much longer 😦 Right before they gave her the TPA, they decided to try and draw it again. This time it worked! Yay! But then we found out that pharmacy didn’t have her meds ready 😦 So we had to wait for a while for all her meds to get up to clinic. They are also implementing a new computer system at Primary’s so everything took about three times longer than normal. Once they got the meds going, she got super nauseous. The Pentam usually makes her a little nauseous, but it was even more than normal. She also kept saying her throat hurt. She had had a cough for a while and she was coughing through the Pentam. All of this made the nurses nervous. I kept assuring them that her cough was normal, that she had had it for a while, but then Liv started in on her low moaning…then full on crying. She had had it. She was so sick of being there, was tired, nauseous and her throat was hurting. She kind of starting throwing a fit and the nurses were concerned it was a reaction to the drug. I tried to tell them that it was pretty typical of her behavior when it got to be long or she was disappointed with something, but they still felt like they needed to Β monitor her. They took her vitals and her BP was elevated, so that concerned them also. They said they wanted to watch her for an hr. By this point it was like 7pm and Liv was so not happy. My very favorite nurse, Becky, heard Liv’s freak out and came to check. She was so sweet and said, “Liv, i have a popsicle in the back! Do you want one?” Liv immediately calmed down for that. I followed Becky out into the hall and said, “This is just her normal freak out she has when she’s upset, physically I know she’s ok. She just wants to get out of here.” She told me she totally knew, she remembers a few other freak outs that she helped her calm down from πŸ™‚ She asked me if I would like to talk to the counselor that is over the HemOnc patients. I told her I thought that would be good. It is super difficult dealing with her when she is like that. For the most part, Liv has been amazing and handled things like a champ. But she has moments where she completely reverts back to like a two year old throwing a tantrum. I understand that its so hard to be in the position that she is, but I want to help her learn how to handle disappointment better. It’s so tricky.

They kept checking Liv’s BP, and it kept reading high, so they didn’t feel comfortable sending her home. I was getting so frustrated, because I knew the longer we stayed, the worse she would get behaviorally. Becky came in to check on her again, and noticed that they had been chiding her BP with a cuff that was too small for her. She got a bigger cuff and they checked again and her BP was in a much better range. It was still a little high, so they wanted to have me get it checked the next day, but they finally said we could go home πŸ™‚

The next day my sweet friend in my neighborhood came over to check her BP so that I didn’t have to take her into the hospital again. Luckily her BP was back to normal πŸ™‚

IMG_5924

Maintenance Month 12

Oct 6-Oct 30

10/9: For about two weeks before the wish trip, all during the trip. and then ever since she got back , Liv had been complaining of tummy and back pain. She was saying that it hurt right in the center of her lower back. The first few weeks it was just like an annoyance to her and she would complain about once or twice a day. During the trip it got a little more frequent and then after her clinic on Oct 5th she was crying hard about it and coming to me multiple times a day saying that it hurt so bad. I had forgotten to mention it at clinic because she hadn’t really been crying about it, but the few days after clinic were when it was at its worst and I got concerned. I started researching back pain in Leukemia patients. I was thinking it could be a side effect of the meds, but everything I read pointed to it being a symptom of relapse. I was a nervous wreck.

I called our nurse at Primary’s and she suggested we go into our pediatrician to have him look her over. He looked her over and said he wanted an MRI to look at her spine and make sure there weren’t any stress fractures in there. He told me Utah Valley Hospital would contact me soon and told me to have Liv fast for the rest of the day. She definitely wasn’t happy about that, especially since she was on steroids. Haha. We got the call to come in at 4:00pm. During the day, while I was waiting, my mind kept going to really scary places. What if she had relapsed? What if she had a tumor? Thats always a concern with someone who already has cancer…another form of cancer. I was so stressed out but tried not to let Liv see it.

We drove out to Provo and immediately Liv was pretty at ease. The pediatric staff there is awesome and they played with her while the dr spent a lot of time with me. She verified that they would be looking for stress fractures, but also for tumors, etc. After about an hr they had Liv come over to get her port accessed. They had me lay up on the bed with her and wanted me to lay her back. She had never been accessed laid back like that and I think the feeling of no control really freaked her out. She started panicking and screaming and thrashing so we had to have a few nurses hold her down. The first poke didn’t work, so they had to do it again, which set Liv off even more 😦 It was so sad to see.

Once the port was in they started giving her the anesthesia. They had to put her under for the MRI because she was too young to hold still for that long. It was a different anesthesia that she normally gets for her LP’s at Primarys. They said it is slower acting but longer lasting. After a few minutes I could feel her starting to go limp but almost immediately her blood pressure shot up to right below 140. They had to pull back on the anesthesia to lower her blood pressure. They kept checking her BP but it still wouldn’t lower enough to turn the anesthesia back on. They decided to wheel her down anyway and see if it lowered as we were on our way to the MRI room. When we got there the Dr. said that it was lowering a little bit but not all the way down yet. She said they would take her back and wait for her BP to level out.

Luckily, right when they were starting her port access Rick called me and said he was able to leave work and he was on his way to be with me. I was SO happy to hear that news. I was an emotional mess between worrying that she had relapsed, and then her port access not going well and then her BP being high.

They told the procedure would be about 45 minutes but an hour and a half later, we were still waiting. It took soooo long. We later found out that it was because they couldn’t give her the full dose of her anesthesia because of her BP so she was slightly awake and would move around so it took a lot longer than they expected. When they finally brought her out to us, we were so relieved! I was still super nervous about the results. It was after hours and I knew we were going to have to wait until the next day to hear them. Amazingly though, as we were wheeling her back up to the pediatric room, a doctor called our doctor and it was the radiologist at Primary’s! She asked him if he had any results on Liv and he said he had just read it and it was completely clear. Phew! No tumors or fractures! Yay!

While we were waiting for Liv to wake up we were talking to the dr. She was telling us discharge instructions and said that Liv shouldn’t have anything greasy, like a hamburger. Well before we had gone to the hospital, I mistakenly told her she could pick whatever she wanted after she woke up since she had been fasting all day. She chose Culver’s and was so excited about it. While the dr was talking to us Liv started in on her low moan. I got super nervous. I totally know what the low moan means…it means Hulk Liv is about to come out. haha. I knew exactly why she was doing it too. She heard the hamburger sentence and she was getting mad that she couldn’t have Culver’s. Well the combo of fasting, being on steroids, being groggy on anesthesia and being disappointed turned Liv into craziness. She started yell moaning and crying and thrashing and then she full on started yelling “I WANT CULVER’S!!!!!!” The dr and nurses were shocked because it was so different of the shy, quiet behavior they saw before the procedure. They started worrying something was wrong….they always start worrying something is wrong…and I always have to reassure them that this behavior is totally normal in this type of situation. I always get embarrassed when I have to say that too. It is really hard to deal with her like that. Well because it was after hours, the doctor herself walked us out to the car. It was the longest walk of my life. liv was in a wheel chair and she was screaming at the top of her lungs in the elevators, all the way down to the main floor, through the lobby of the hospital, and on the whole walk to the parking garage. The dr kept trying to talk to her and she even tried to compromise with her and said “Ok Liv, you can have fries at Culver’s, Ok? Just not a hamburger. It will make you so sick honey.” Liv just started screaming “NOOOOOOOO! NOOOOO!” at her. Oh man, it was the worst. Most of the drive home she was screaming at me. She looked possessed and like she truly wanted to hurt me. It was frustrating, hilarious, and sad to watch all at the same time. About 15 mins before we got home it was like she all of a sudden snapped out of it and stopped screaming She was just whimpering quietly in the back seat. I asked her if she was ok and she sadly nodded her head, “yes”. I calmly said one more time, “Liv I’m sorry you can’t have a hamburger honey, i didn’t know you couldn’t after this anesthesia, but we can get you some fries if you want?” And she silently started sobbing but said “Ok”. It broke my heart. I was so happy she wasn’t screaming anymore. A few mins later when I could tell she was way more with it, I asked her if she remember screaming at the doctors and me and daddy in the hospital and in the wheel chair in the elevator. She looked at me so confused. She thought I was making it all up. She totally didn’t remember doing it. Haha!

 

10/12: Because Liv’s counts were low at the last clinic, they also needed us to get counts checked 14 days into this month to see if they were elevated enough to resume chemo so we went to American Fork Hospital’s IV Therapy for that. The ladies there are SO NICE to Liv and she always is a lot happier there than when we have to drive all the way up to Primary’s. This time was a little more traumatic though because of her rough blood draw just three days before. Luckily it went perfectly and Liv liked doing the flushes herself. Β We got the call the next day that her counts were still low so we still couldn’t resume her chemo meds.

IMG_2163

Over the rest of the month, before our next clinic, we did a lot of fun things. But all the while, Liv’s pain wasn’t getting any better. In fact it was getting worse, and I was getting more and more concerned about her. Liv’s oncologist decided we should probably have her come up and have her look at her.

10/20: We went in and had labs drawn and Dr. Afify met with us. We discussed the possibility of relapse. She also had a worry that it could be that because back pain and bone pain are signs of relapse. She thought that there could be other explanations as well. She said that sometimes steroids can cause arthritis in the hips. She said its very uncommon in kids though, normally you see that in teenagers. But she wouldn’t Liv to get an Xray that day to see if there was any of that going on. She decided to wait to do a bone marrow aspiration until Liv’s next clinic. She was scheduled for an LP that day anyway and she didn’t see any need to put her under anesthesia two different items. So we went for hip X-rays that day (all clear) and then we scheduled a bone marrow aspirate to be down with her LP in ten days.

 

 

Fun things during the month: Soccer, playing with friends, playing in Yia Yia’s yard in the super warm fall weather, playing with Baby Noah, piano lessons, seeing Aunt Sophie when she was in town, and school. I volunteer in the classroom and I love watching how focused Liv and Street are. They LOVE school!

 

Cornbelly’s as a family…I was especially proud and impressed with how determined Liv was to climb the rock wall. She doesn’t have a whole lot of strength in her muscles and normally its really hard for her and she wants to give up. But this time, she pushed herself to keep going!

 

Kindergarten Field Trip to the Hogle Zoo. Liv got to be with two of her best friends in her group, and I met them up there with Daysha and Sage and Baylor. It was so much fuN! It was also so funny to see my two kids. They are so tall….Liv is way taller than all her friends. She is two inches taller than Street, and Street is taller than all of his friends! ITs crazy. Haha. By the end of the field trip, Liv was really complaining of her legs hurting and her back aching 😦

Pumpkin Patch with Sage and Baylor:

Painting pumpkins:

We went to the Scarecrow Festival with Sage and Baylor. It was a really fun day! Part way through, I saw a girl with a bald head that looked to be close to Liv’s age. In fact, it was kind of shocking how much she looked like Liv did when she was bald. She had almost the exact body shape. We had been to the scarecrow festival the year before when Liv was in that exact phase. It was such a flashback and hit me right in the stomach. I saw her mom and I wanted to go talk to her so badly, but I also wanted to give her some privacy. Everyone handles things differently, and while I don’t mind people talking to me and asking me about Liv and her treatment, others are a lot more private. All of my kids were running to me and pointing at the girl and saying, “Look mom! She has a bald head too!” Right when I finally got the nerve up to go talk to the mom, she started walking away and I chickened out. I told myself that if I saw her again while we were there, I was going to go talk to her. We went through the rest of the festival and as we were leaving, I saw the girl again. I nervously walked over to her mom and asked if her daughter was gong through cancer. She told me she was. I asked her what type and how old she was. She was four years old, with Pre B ALL and her dr was Liv’s dr! It was so crazy! It was like looking at myself one year ago. I got tears in my eyes and pointed out Liv and told the mom that Liv was going through the exact same treatment, but was a year ahead of her daughter. She was such a nice mom, and looked a little overwhelmed. Probably the exact same way I looked a year ago. I was so grateful for how far we have come and how well Liv is doing now. I hope that seeing Liv provided her with some hope that it does get better and her daughter will be better soon.

SUU Football Game. We FROZE to death! But it was so much fun πŸ™‚

Ward Trunk or Treat:

IMG_3685

10/29: The night before we went in for clinic. Everyone was feeling some nerves over Liv’s bone marrow aspiration. Livvi was getting worse and worse with her back and tummy pain and she had a hard time enjoying herself for too long. The pain would always come back and she could come cuddle on my lap. We went out to Yia Yia and Papou’s house the night before to hang out and get Liv a blessing from Fred and Rick.

IMG_3813

10/30: Clinic

Poor Liv was such a trooper. It is so hard on these kids to fast all day, get their yucky chemo, get put to sleep and then wake up with pokes in their back 😦 The hospital is implementing a new computer system right now too so the appointment took about three times longer than it normally does. Luckily daddy came to hang out with us today! Sam met us at the entrance to the hospital and gave Liv an adorable stuffed White Blood Cell. She loves it and named it Puffy and snuggled with it all day at clinic πŸ™‚ She was nervous to go to sleep and whimpered a bit but did such a great job. She was happy as can be to see me walk in her room with her favorite potato chips when she woke up πŸ™‚ Once we finally got out of there we got her a big Protein Style burger at In N Out. Her aunt and cousin also met her with some Sweet Tooth Fairy treats. We got the amazingly good news that afternoon that her Bone Marrow was clear of Cancer Cells and she hadn’t relapsed. Yay!

Make A Wish Trip, Going Home

 

We were super sad to say “good bye” to our home away from home for the last time, but we were excited to get home to see Stade! We missed him so much!IMG_1634

The kids wanted to ride the carousel one more time before we left.

 

 

We checked out at the House of Hearts and said goodbye to the workers we had met and off we went!

IMG_1642

At the airport we saw a Disney statue and the kids wanted a picture. I was sad thinking about how we wouldn’t be surrounded by Disney anymore. We love Disney in our house!

IMG_1646

Once we got to the airport, the kids were super ready to get home. They kept talking about all of the things they missed. Their house and their beds and school. I’m glad that they remembered that they did have a good life at home πŸ˜‰ They were exhausted the whole trip and once we finally got in our van, the twins fell asleep hard πŸ™‚

IMG_1678

Once we walked in the door the first thing they did was give Stade his PJ Mask toy and all snuggle up on the couch together! Stade was so excited to see the kids, but was super mad at Rick and I for abandoning him. Haha. Luckily it only lasted a day πŸ™‚

IMG_1683

 

Make A Wish Trip, Day 5

Day 5 we did Island’s of Adventure at Universal Studios. We stopped at the cafeteria for our favorite waffle breakfast and ran into Mayor Clayton before we headed to the park.

 

 

It was a fun day! The employees at Universal are seriously incredible with Make A Wish Kids! They greeted us with huge smiles and would take us right up the exit ramp and put us right on the ride every time. Anytime the kids wanted Character photos, they took us straight to the front and the characters would spend extra time with us. We only spent a half day at Islands of Adventure because the kids had been dying to swim all trip. The weather never cooperated when we were at the Village, and able to swim, so we decided to just do a half day at the park and then head back to swim.

 

The first stop we made at the park was The Hulk. The twins weren’t tall enough to ride it, but Daci was and she really wanted to. Rick and I each took a turn riding with her while the other stayed with the twins. Liv was super upset about it and cried the whole time she waited. Haha. Poor thing!

 

We wanted to ride The Amazing Spiderman, Street had been so excited for that all trip, but when we got there we found out that it was temporarily closed. I was really hoping, for Street’s sake, that it would open back up before we left!

Next we stopped to see Captain America! Street was absolutely starstruck. It was so cute. Captain America was so sweet to Liv and gave her a lot of attention, and then he took a picture with them and let Liv hold his shield.

 

IMG_1447 (1)

After the supehero section we headed to Dudley Do Right’s Ripsaw Falls. Rick and I weren’t all that excited about getting wet when it was already pretty chilly and overcast, we got drenched but it was actually a really fun ride! Liv wanted to sit in the front, I don’t think she realized that that meant she would get the wettest. Haha! She was great about it though and loved the ride!

IMG_1623 (1)

IMG_1460 (1)

Next we headed to King Kong and the kids were pretty nervous. It was super fun though and I was so proud of the kids for trying things that were a little scary πŸ™‚

IMG_1464 (1)

Next we went to Jurassic Park and they were nervous for that one too, but ended up really liking it. We didn’t tell them about the giant drop at the end, so that was a big surprise for them. Haha!

IMG_1620 (1)

After the big ride we went to do the Pteradon Flyers. The workers were so sweet and let them ride it twice in a row. The kids LOVED that one!

We finished all of those rides and decided to head back to the Village to swim. On our way out we walked through the cartoon park and we snapped a pic of Daci in front of a bubble that said “Wish You Were Here” and sent it to Yia Yia to show Stade. We were missing him really bad!

IMG_1482 (1)

On the way back to the village we stopped at Applebee’s for lunch. It was raining when we went in, and I was worried that the kids wouldn’t be able to swim. I knew they would be so disappointed. We ate lunch and when we came out, it was sunny! We rushed back to the Village, got our suits on and went to the pool. The kids had so much fun, and Rick and I relaxed in the chairs. We were pooped after five straight days of Amusement Parks! Rick even fell asleep πŸ™‚

IMG_1510 (1)

After about an hour, it started to pour! So we went back to the village to get ready for Mayor Clayton’s Special Surprise Birthday Party. The kids had a blast at the party making cards for Mayor Clayton, frosting cupcakes, dancing, and playing party games. At the end of the party Mayor Clayton and Miss Merry came and we jumped out and yelled, “Happy Birthday!” The kids all lined up to give him his cards, and of course Liv was the first in line πŸ™‚ She was so excited to give him a big hug and his card.

611621_10-3-17BirthdayParty_DSC_0075_10-03-2017

The kids were so sad when we got back to the Village. They didn’t want to leave and were so sad thinking about not being at the Village or going to the parks anymore. Street kept saying, “I am going to miss this so much!” They were exhausted though and they crashed hard!

IMG_1631

 

Make A Wish, Day 4

We went to breakfast and then to see where Livvi’s star was placed in the Castle of Miracles. Hers was placed right above the door in the tower. She was so excited to see it! Then we went into the Grand Ballroom to meet the Disney Characters from Disney World! Mickey was so nice and loved all of the kids fun shoes. Mary Poppins was super sweet and talked in all the phrases that she says in the movies. And Goofy was so much fun! He was silly and funny with us. The kids loved meeting them!

 

Then we headed out to Harry Potter World! Our first stop was Diagon Alley. They wanted to ride Escape From Gringotts first. It was such a fun ride! We did it two times in a row and we absolutely loved it. The workers at Universal Studios treated us so amazingly! They took us right up the exit line at every single ride and were so kind to us. Disney was good, but Universal was GREAT in that regards. They treated Livvi and our whole family like royalty.

 

After Escape from Gringotts we went straight to Ollivander’s to see the Wand Experience. the kids loved watching the little show and the girl get matched to her wand. Then we got to go into the wand shop and pick out our own wands. It was so crazy in there! There were people crammed in there and everyone was yelling and pushing. Street wanted to pick Harry Potter’s wand for his, but the girls wanted to get matched to a wand. So I found a worker that looked like she was matching people. When I got to her I could tell she was so frazzled. It was just pure chaos in there and everyone was shouting at her, but no one seemed to actually be getting helped by her. I walked up to her and said, “Is this the line to get matched to a wand??” and she kinda snapped back, “I guess so, theres not really a line, theres just people everywhere.” So I asked her if she would match my girls and she said yes but was pretty frazzled still. I gave her some qualities that represent Daci like kind, creative, smart, loving and she matched her to a Hazel wand. Daci was so excited. Then I told the girl that Livvi she is extra brave and strong because she if fighting Leukemia right now. The girl sunk down to her knees, in the middle of all of those people, so she was eye level with Liv, held her hands and started crying. She said she had the perfect wand for someone who is as courageous as her and gave her the Ivy wand and a big hug. It was so sweet to see how Liv’s story melted her hard and frazzled external surface.

Once we bought the wands, we had fun going around Diagon Alley and doing all the enchantments with our interactive wands. We loved walking around each of the shops in the alley and seeing so many things from the movie! We also went to Flourean’s for butter beer ice cream and to the Weasley’s Shop for candy like Every Flavor Beans and Chocolate Frogs πŸ™‚

IMG_1658

Once we finished up in Diagon Alley we went to hop on the Hogwarts Express! The Hogwarts Express took us over to Hogsmeade in the other Universal Park. The ride was super fun, and a nice little break off our feet πŸ™‚ The kids ate their treats on the short little trip over.

 

We got off the train and walked through the train station and when we exited we came out to this incredible site. It was so beautiful and CRAZY how much it looked like the scenes in the movie! It was so magical. We headed over to the ride, The Forbidden Journey and had to get a picture in front of Hogwarts!

IMG_1672IMG_1666

The Forbidden Journey was so much fun! We got to walk through the Hogwarts Castle as we made our way up the exit line. We got to see the Fat Lady and the Sorting Hat, and all kinds of things from the movie. The kids loved that part! The ride was super fun and a little scary. It kind of made Rick and I sick, but we still enjoyed it πŸ™‚

After the Forbidden Journey, we did the Flight of the Hipogriff ride. The kids LOVED it. Rick and I didn’t so much. Haha. It was just a really short ride with lots of sharp turns that hurt our ribs. Haha. But it was definitely a favorite of the day! After that ride we went to eat at The Three Broomsticks. We were all STARVING and I knew they had good gluten free options. The problem was, the kids didn’t like any of it. Haha. It was definitely very British food and they weren’t fans. The atmosphere was fun though!

 

After lunch we rode The Forbidden Journey and Flight of the Hipogriff one more time, did some enchantments with our wands around Hogsmeade, and then hopped back on the Hogwarts Express to finish out our day in Universal Studios!

 

We were so exhausted after Harry Potter World, but we still had quite a few hours left in the day and felt like we should make the most of it. We decided to do the rides in Universal Studios so that the next day we could spend the day staying in Island of Adventures. We didn’t have our stroller once we got off the Hogwarts Express and we were too lazy to go back to the entrance for a new one, so Rick decided to try and carry Liv as much as he could. Haha. That was quite the feat and I felt so bad for him. Lol.

The first thing we did, Daci was dying to go on the big roller coaster called the Rocket. She was the only one of the kids that was tall enough so Rick said he would take her and I took Street and Liv to meet Shrek and the Minions. Donkey was hilarious, haha. After we saw the minions, we met Daci and Rick when they were getting off the ride and Daci LOVED it! She is such a daredevil πŸ™‚

We did a bunch of rides through Universal. We did Transformers, Shrek 3D, Men in Black, ET, the Simpson Twirl and Hurl Ride, and Woody the Wookpecker’s Rollercoaster. Daci wanted to Ride the Rocket one more time before we left so I took her on it. Street and Liv were pretty disappointed that they couldn’t go and Street even started crying over it. Haha, poor guy. After all of that we were exhausted and ready to head back to the villa!

IMG_1665

IMG_1370

 

We made it back to the villa in time for Halloween! Every Monday night its Halloween at the villa and the kids got to go play games, dance with Mayor Clayton, and Trick or Treat. Liv was so excited that she got her Tinkerbell costume at Disney Land because she was able to wear it to the party πŸ™‚

Make a Wish, Day 3, Part 2

We headed to Magic Kingdom first to get in the things we didn’t get to on the first day, and also to redo a lot of our favorite things πŸ™‚ We headed straight for Space Mountain first. The workers were SO cool and when they saw our shirts after our first run, they said, “Oh you’re with Make a Wish!? You want to go again?!” And they sent us back around two more times πŸ™‚ We had to do the “dab” as a family for our last run πŸ™‚ So fun! We went to do Buzz Lightyear again, the kids love that one πŸ™‚ Then we did 7 Dwarves Mine Train two times in a row. Such a fun ride! We stopped in at the Winnie the Pooh ride, geared more toward young kids but still cute πŸ™‚ After lunch we hit up Rapunzel and Tiana. Liv was beyond excited! Street was too, he just kept pretending like he wasn’t πŸ˜‰ Tiana was so unbelievably cool and sweet to my kids. She spent so much time with them and even danced with them πŸ™‚ She taught them to “lean back”. Haha! Rapunzel wasn’t as affectionate or talkative, but she is one of Liv’s favorite princesses, she she was in love with her nonetheless πŸ™‚ After the princess we went to see the 3D show, Phillharmagic. So cute!Β When we got done with that it was raining so we decided to grab some lunch at the Pinnochio Haus again.Β They have great Gluten Free options! After lunch it started to rain really hard so we ducked into It’s a Small World. By the time we were out it was only barely sprinkling so we ran to Big Thunder Mountain so we could catch it before it started raining again. The kids absolutely LOVE this ride! After BTM we caught the tram and decided to head over to Animal Kingdom so we could ride all their favorite rides and catch the night show!

 

 

When we got to Animal Kingdom we of course headed straight to Expedition Everest and rode it three times. Haha. The kids wanted to ride it more but Rick and I were way too nauseous to ride it again right then. Haha. Then we went over to Pandora so that we could ride the other ride in Pandora that we didn’t get to do the day before. On the way to Pandora, we passed the street dancers in Africa and we decided to join them. It was fun!

IMG_1508.jpg

Once in Pandora, we rode the Na’vi River caves ride and they were absolutely beautiful, but they weren’t thrilling at all, so the kids didn’t have any desire to do it again. Haha! They were dying to get on Flight of the Avatar again though! So we did that two times and loved it just as much as we did the day before πŸ™‚ We got their specialty drink after and loved it but we all thought the boba balls were gross. Haha. The whole time we were there we were kind of rushing and panicking to get everything that we wanted to in because the forecast had shown 80% chance of rain for like the whole day. Every time we came out of a ride we were so pleasantly surprised to see that it wasn’t raining yet! I kept checking my app and the rain would keep getting pushed back an hr. We were lucking out big time! By 6pm though it was saying like 90% chance of rain for 8pm which was around the time that the show was going to be starting. We were so bummed. We really wanted to do a night show and it was our last chance to do one! We decided to do Avatar one more time before the night show. We fully expected to walk out and have it be pouring but it wasn’t! We ran over to the show and got awesome seats! The show was pretty, but not as exciting for kids. I was kind of bummed about that. The kids all wanted to ride Expedition Everest one last time before the park closed, after the show. So we walked right on the ride, and had so much fun riding it in the dark. It was a completely different experience! When we got off the ride the normal line and the fast pass line was a mile long and we were feeling so proud of ourselves that we got right on after the show and were going to make it back to the tram before the lines got long. Thats when I realized that i didn’t have my phone! I ran back to the exit of the ride to tell the attendant that I left my phone on the ride. There was a train sitting right there at the exit. I asked her if she could check in it really quick but she said its against the rules for any worker to touch the cars when they are in that spot, so she would have to call a manager and have them come look. She called a manager but no one was coming. Just then over the loud speaker they announced that the ride wasn’t working and that it would be closing down for the night. Apparently two cars had gotten stuck up at the top of the ride by the Yeti! They were going to have to send people up the ride to unload the riders and walk them down. Ugh! We ended up waiting around forever! Who knew which car my phone was in!? What if it was in the cars that were stuck!? We would have to wait until the next day to get it back and we weren’t coming back to this park the next day! I was panicking. The girl told me to wait in the gift shop and that as soon as the manager came, she would come get me. We waited and waited. I kept walking back to the exit and I noticed something. Every time I walked over to the exit, Β my apple watch would connect to my phone. But as soon as i walked into the gift shop it would disconnect. That means my phone was in the car at the exit! I knew it! I kept trying to tell the girl but she wouldn’t walk two feet to the car and look for me! Ah! I was so frustrated! Rick was super annoyed too and he told me to ping my phone from my watch. So I turned on the ping and it started dinging! I told her “It’s in there!” but she wouldn’t get it without a manager. Β Haha. Luckily he came walking by and I said,, “I know my phone is in that car! Will you just grab it for me really fast!?” Luckily he did and we were finally on our way! We decided that Day 3 was our LUCKY day. We got to do every ride we wanted to, the rain never came even though it was highly forecasted and we got my phone back. Of all the cars it could have been on, it was the one at the exit! Which also means we are SUPER lucky that we got on the ride when we did. We were the last car to ride before it broke down. If we had been on the car that got stuck by the Yeti, my kids would have had a panic attack. Haha! Such a SUPER FUN DAY!