Ari's Updates for Monday

Monday, September 7. 10:06 a.m. VICKI: This is what the swelling is from. FWD: (from Mom) Partly the steroids and her liver is enlarged.

Monday, September 7. 9:49 a.m. VICKI: Much better night. The drs. said she is stable. Mom said for the next few days there won't be much news unless she turns for the worse because they are doing a low grade chemo on her. It will take 2-3 days before they know if it's helping. At that point if it's not working then they have to do an aggressive high dose chemo. So hopefully no turns for the worse. I'm finding out why she is swollen. Mom hasn't text me back on that one. Oh and they can't give her tylenol anymore for the pain because her liver is too enlarged and struggling.

Ari's Update

For those of you who don't know, my brother Travis' daughter, Ari, has been diagnosed with LCH. She is currently in Primary Children's Hospital. They have so many people who care about them and are praying for them. I put the information on my blog so that those who would like, may read about how she is doing. Jaymi also summed up her history and condition really well...I won't try to recreate it. http://kingskourt.blogspot.com/

Her history as transmitted via text messages to the family. Most recent texts are posted first in the reading order:

Sunday, September 6. 11:01 a.m. VICKI: Bad night. She was moved to ICU. Her platelets are suppose to be 150. Hers are 8. She is having another blood transfusion. They did get the pick line in this morning. They are aggressively going to treat the LCH. They aren't waiting for anymore tests to come back. They said they are in emergency mode so they will start treatment without confirmations.

Saturday, September 5. 5:46 p.m. VICKI: The pick line was unsuccessful. They tried for over an hour, but her veins were too little. They couldn't get it in. They are going to try again in the morning so she's going back to getting poked every four hours. Mom said the poor thing falls asleep everytime right before they come in again.
Saturday, September 5. 1:21 p.m. VICKI: Ari is having a pick ?? placed at 3:00 I'm not familiar with it. But I guess they install a line in her that is like a tube that goes directly to her heart so when she has medication given to her she won't be poked everytime. My Mom said that her veins are so hard to find that it's been awful every time they have to give her medicien and right now that's every 4 hours. To have the pick installed is a surgery with general anesthesia, but it will be better for her.

Saturday, September 5. 9:58 a.m. VICKI: Drs. haven't said anything. but Ron was just reading about it. He said that he found a more medically based website (he kept reading words that I couldn't pronounce.) Anyway, it listed a spectrum of the cancer. The good end is a focal LCH where it has affected one area. That has an 80-90% survival. However multi-symptom (and the more symptoms you have the worse) is at the far end of the spectrum and it has a less than 50% survival rate because it gets into all of the organs and starts shutting them down. She has every single symptom...and she has the lesions on the brain, enlarged liver and spleen, and fluid in the lungs. My Mom said they asked one of the drs. last night what the chances of survival were and she wouldn't give them an answer.

Friday, September 4. 6:55 p.m. TRAVIS: http://www.cancerbackup.org.uk/cancertype/childrenscancers/Typesofchildrenscancers/Langerhanscellhistiocytosis

Friday, September 4. 6:53 p.m. TRAVIS: If anyone wants to read up on what the doctors believe Ari has this site explains it the best. I will send it in the following text.

Friday, September 4, 2009 4:58 p.m.
VICKI (in Alaska): Well they have some answers. It's not leukemia it's actually worse. It's cancer and it's called LCH. They said it's really hard to explain it. The best thing they said to do is google LCH. She is scheduled for a cat scan tomorrow. They have to see where it has spread. It is treated with chemo but they didn't give any statistics.

Thursday, September 3, 2009 4:27 p.m. JAKE: Hey. We are breaking the fast now.

September 2, 2009 6:15 p.m.
HALEY: We are starting another fast for Ari. Her surgery is at 2:30 so we will end it at 5. Tell anyone you want. They think she has leukemia. Thanks.

Ari's Sedation prior to Pick Surgery

This is video of Ari getting her medication to be sedated before going into surgery. Haley is with her. We were able to watch her on Skype and my camera video taped my computer screen. The technology is pretty cool. I wish it was video of something different than this, but grateful to "be" there anyway.

And here's Lane...

He is such a happy kid...and a little mischievous. I am afraid he is going to be like Brant. He stuck and pair of suitcase keys into an outlet a couple of days ago and of course, threw the circuit. I was close enough to it that is sparked my arm. He loves his soft blankets. He STILL only has his front eight teeth. One is slowly coming through on his upper left side. He can say quite a few words: He says "Ma" for Mom and "Mam Mam" for Grandma. It sounds very close. Only a trained mother's ear would know the difference. He also can say on and off, outside, baba (bottle), and yea, that's about it. Not very verbal yet. He climbs like a monkey and can scale any cabinet. He can get on the kitchen counter from the floor--and the bathroom counter. Yesterday, he figured out how to climb into his height chair. He moved Isabella's walker (yes it has wheels) and climbed on it to get in the chair. And, he did this while Isabella was in the height chair.

Another accident streak for Madi

Madison, unfortunately, has my accident prone-ness. This black eye she is sporting is because she turned around too fast and ran into her own dresser. The other pink spots on her face are from getting into my permanent lipstick. It DOES NOT come off! It's horrible. It's like nail polish or something. Yesterday, she slipped on the patio and fell flat on the back of her head. She has a big goose egg. I'm sorry Madi, you get that from me.

I am thankful for the fleas

My visiting teacher once shared an incredible story she read in a book about the Holocaust. It was about two sisters who ended up in a concentration camp. One sister was humble, grateful, and full of faith in God’s plan for her. The other sister, though, was more like the rest of us—struggling to be thankful in the face of their horrible situation. Somehow, they managed to smuggle a Bible into the camp, and it became their lifeline. They loved reading from it together.

One day, as they were reading, the humble sister came across a passage that said to give thanks to God in all circumstances. The other sister couldn’t believe it. She asked, “How can we possibly be thankful for this?” But the humble sister started listing all the things they could be thankful for. She said they could be grateful that they were together when so many families had been separated. They could be thankful that they had smuggled the Bible in and could share the word of God with the other women in the camp. She was even thankful for being surrounded by so many other women because it gave them a chance to bring hope to others.

The other sister, still doubtful, shot back, “And what about the fleas? Are we supposed to be thankful for them too?” Their bunkhouse was infested with fleas, and every night, they’d crawl into bed and feel tiny bites on their legs. It seemed impossible to see any good in that.

But the humble sister, without hesitation, said, “Yes, even for the fleas. They are part of God’s plan, too.”

Later, when they were released from the camp, they learned something incredible. Their bunkhouse had been the only one with such a terrible flea problem, and because of it, the soldiers refused to enter. The fleas had kept them safe from the verbal and physical abuse that other prisoners endured. As awful as they seemed at the time, the fleas turned out to be a blessing.

This story really stuck with me and humbled me as I thought about my own complaints and murmuring. Maybe the trials we face—no matter how unpleasant—are actually protections we can’t see in the moment. It reminded me that God knows what each of us needs and that we have to trust Him, even when it’s hard.

Now, whenever life feels overwhelming, I remind myself of that story. I remind myself to be thankful for the fleas.

St. George Quickie

I took the kids over to St. George for a quick trip. We stayed at Travis' house Monday night and then came back on Tuesday night. Vicki and her family, along with Mom, Jaymi, Krew, Jay and Ashley Shock, also came down from Mt. Pleasant. And, of course, Kim was already in St. George. My kids had a blast with their cousins. They always have so much fun seeing them.
When we were getting ready to leave, the yard was full of kids. Some little neighborhood boy wandered into the crowd. I don't know where his parents were. He must have been about 2 years old. No one seemed to notice him or mind that he was there. He was just another kid. Porter came running up to me yelling, "Mom, come see! Come See!" He drug me over to the boy and said, "Look!" I said, "Yes, Porter I see him. But, we need to get ready to go." Porter said, "Can we take him home with us?" I had to laugh. I said, "Porter, I don't think his Mom would like us to do that."

Dinosaur Tracks

We went to St. George last week to hang out with family. I had a few meetings to go to. Haley and I took our kids to the Dinosaur Musuem. I have to say it wasn't a great place for small children, but I think they had fun anyway. It's more of an older-kid thing. We took them to the little park afterwards. They had fun.

I have been super-busy. Waiting to hear back on a possible job with Paul Mitchell as an Admissions Leader. I have a second interview on Saturday.

Better to give than to receive

I have been reading Deepak Chopra's, The Seven Spiritual Laws of Success. The book is amazing. It is a small book, but I have been reading is slowly and sometimes reading chapters over again. The last chapter I read was on The Law of Giving. It explains how we must always be giving to others. That does not necessarily mean that we give things or money. It can be a prayer given on behalf of someone. It can be kind words or compassion. Each chapter I read I have been trying absorb into my life. This past week I have been trying to "give" something to everyone I come in contact with. It really changes your mindset.
I took the kids to Jack-in-the-Box on Saturday. While there, I noticed how hard the front counter person was working. She was also running drive-thru. I've actually had to do that before and it is not fun! I'm sure some of you have to. The most frustrating thing is that the people coming through drive-thru don't realize how hard you're working and they're frustrated because you're not moving fast enough.
A group of senior citizens came in--and contrary to the nice old lady/man image that they're supposed to have--I am of the opinion that old people are onry and cranky. Anyway, this group was no exception. They all only wanted coffee. And, of course, they were frustrated that she didn't already have enough coffee made for all of them. (Like she would know the local Senior Center was taking a field trip.) Despite their mood, she was friendly and courteous to each one. Oh, and did I mention she looked at least 6 months pregnant?
Anyway, I thought I am going to tell her what a great job she is doing. Then, I thought, it would be even better if I wrote her a note. She could show it to people and hang on to it. So I scribbled a small paragraph to her. I walked past the counter to see her nametag. I wrote her name of the front of the napkin and left it with the cashier. (A guy came in to run front counter while we were there.)
I can only imagine how happy my note must have made her. I am not singing praises to myself--don't get me wrong. It just made me feel really good to take the time to give to someone else. It took me off of the focus of my own problems and helped me to see that someone else was working harder than I was. I guess I bring this up today, because I want to share with everyone the opportunity to give to others. It is such a wonderful thing. I hope everyone will practice the Law of Giving more. Once you start doing it, it can be hard to stop. And, the best part is, I believe the giver gets more than the receiver. It is true that it is better to give than to receive.

Kid Chat

These are silly little sayings...I am sure only a mother would love, but funny nonetheless.

A couple of days ago I announced to Porter I was going to quit as Mom for the day. I was tired. He could be in charge. His response: "But Mom! I already AM in charge. If Lane goes on the stairs I'll tell you." He was so serious and made me life, so I thought I would try it on Madison. She got a little upset and said, "Mom!" (with a big emphasis). "I don't wan't to be Mom, I want to be Madison!"
*****
The twins have really gotten into singing lately. They don't know all the words, so sometimes when they're listening to us sing, they're a few words behind. Yesterday in church Madison was singing--and I mean singing! She was off-key and loud. Right in the middle of the song, she turns to Brant as if she is both surprised and amazed and very sincerely says, "Dad! I sing GOOD!"
*****
Instead of telling me they are hungry, they have started saying, "Mom, my tummy is telling me that it needs some food!"
*****
Yesterday Brant took Lane into nursery. He's at that really back stage where it's hard to keep in still through 3 hours, but he's only months away from being old enough to go to nursery. So, sometimes Brant takes him into nursery to entertain him. Of course, the twins are in their too. A little boy came up to Lane and just hit him. Brant watched to see what Lane would do. He looked around, picked up a toy and promptly hit him back. The boy started hitting Lane and then kicked him. Lane looked at him like he was an idiot and then walked away.

Star Trek...and the next generation

The STNG Convention (short for "Star Trek the Next Generation" for those of you non-trekkies. Okay, that's all of you.) is in Las Vegas this week. My keen STNG radar caught all of the news blurbs on it. I have always secretly wanted to go, but didn't ever want to have to admit that I have been to one. Now I know how gay people must feel when they really want to come out of the closet, but can't. I never liked the old Star Trek (and please make sure you are saying Tre-k, not Track--You Vicki, totally you :) The old one is so totally different from the STNG.
Anyway, it got me thinking about my next generation--that is my children. They're only 3 years old and they've already Skyped to their cousins. How weird is that? What I used to watch as a science fiction program on TV is reality for my children.
I think about what technological advances have happened in my lifetime already. (A mere 38 years and 10 months.) Wow! I vividly remember get a big, huge, honkin' microwave. It was so cool! I was like, we don't have to warm the potatoes up in a pan on the stove? That's so wild. Our first "computer" typewriter was the bomb. At the time, I guess we would have called it totally awesome. Then we did get a computer. A real one. It had a DOS program system on it. It was so archaic. Forget Wii, Xbox, and Playstation. We were all about Atari. Ping Pong anyone? And who needed Limewire for your Ipod or MP3 player when there was a perfectly good jukebox down the street? I could go on and on and on. It just makes me wonder what my children will see in their lifetime. It's exciting to imagine the possibilities. And just for those who need to hear it:

Space: The final frontier. These are the voyages of the Starship, Enterprise. Its 5 year mission. To explore strange new worlds. To seek out new life and new civilizations. To boldly go where no man has gone before.

Just Stuff

I have little things that have come to mind to write about, but haven't sat down to add them. I have to remind myself that I am doing a blog so that I can chronicle/journal my children's childhood. Sometimes I think I am a weekly columnist and have to have a theme or topic to write about.
The weather in Vegas is starting to cool down. We are able to enjoy a chilly low of 83 degrees now. The daytime has also dipped a few degrees to around 100-103. I am really looking forward to the next month when it will get even better. I remember Vicki always saying that if you could bear the four hot months of summer in Vegas, the rest of the year was fabulous. (I don't think she said, "fabulous," but you know what I mean.)
I am back to trying to come up with ways to earn extra money. Rhonda and I went "yard saling" last Saturday. We found a great wooden bunk bed with a built in desk and a separate chest of drawers and mirror. They sold it to us for $100. We have been working on refurbishing it. It looks really good. We only have to put the Satin finish on it and then it will be ready to resell. We also found what we call "roadkill." These people here in Summerlin put perfectly good furniture out on the side of the road. (Say that with my white trash accent.) What can I say, we will do anything for a buck. We picked up some roadkill on Saturday--a nice TV stand. It was out for the trash as it appeared the family dog had it's way with the corners. We took it home and built out the corners with some wood glue, dry mix, and such. We are also in the process of re-finishing it.
I am starting back up on my credit restoration business. I enjoy it. Would enjoy it more if someone actually paid me to fix their credit for them. I have my blog going and am working on a website. I have all my numbers--800#, fax, phone, etc. My ads are out--just waiting for the phone or email to overflow.
Lane is finally starting to get a back tooth. Poor kid has had his front four top and bottom since he was 5-7 months old and hasn't gotten any more. The twins say he is turning into a "Sharp Tooth." Their "Land Before Time" reference. Sometimes they'll yell, "Watch out! Here comes the Sharp Tooth!" Lane just grins and chases after them. They are totally into The Land Before Time series. We found some clearance toys that were squishy dinosaurs at Target. They were only a $1.48. Porter immediately named his Spike and Madison calls hers Sara. They are actually the same type of each of those--but not TLBT brand. They take those dinosaurs everywhere with them. It's the best $1.48 spent this month.
I went to the temple this morning with Rhonda. It was really nice. I haven't been for about 3 weeks now. I was going every week and have really missed it. They say the temple cannot be described in words to those who have not been. And, words are not necessary to describe it to those who have.

More birthday pictures

Twins Birthday

We had a fun birthday for the twins at Travis and Haley's house. They had such a blast. They love playing with their cousins and of course swimming in Travis' big pool. We had pizza, cake, and ice cream. They had tons of presents. I wrapped Madison's presents in pink paper and Porter's in blue. Lane was more excited to see what was inside the gifts--although he did tear into a few of them.

If Vicki were 80 years old...

...she would have been the woman sitting in the seat next to me. I was traveling from Las Vegas to St. George on a shuttle bus and sat next to the most charming 80 year old I have ever had the pleasure of speaking with. She was small and healthy and very spry. She was quiet and happy and content even though she had her share of trials in this life. There is something sacred and magnificent in the wisdom of our elders. I literally felt in awe as I listened to stories from her life. She was married at 19 to her 24 year old beau. They lived their lives together until he passed away 5 years ago. They moved to St. George 16 years ago to be a drier climate that would help her husband with his health. Though she was the only member in her family and had a strong testimony of eternal families, she was unable to have children. How that has made her heart ache throughout her life. But she has only grown stronger in her belief that she will be a mother when she returns to Heaven. It was so neat to hear her testimony of the lessons she has learned in life. And her sweet testimony of knowing that her husband has been by her side even after his death. She sees him often in the temple and feels his presence in her home.
I think our society has gotten away from the respect that needs to be given to those who have lived for so long and have so much wisdom. I am still amazed that this woman has lived twice my life plus one year! Wow! I hope I am as good as she is at her age.
BTW, she reminded me of Vicki because Vicki can talk to anyone for hours. She strikes up a conversation with perfect strangers at the temple, the airport, or where ever. I, on the other hand, can sit next to someone and be perfectly content not saying a word. I have to say it was kind of fun to learn about someone else's journey in life. Now, I can see why Vicki likes to talk to people so much.