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Tuesday, September 8, 2009
New Blog Just for Ari
ARI: Thanks for the prayers
Ari: Comments from Donalyn
Anyway the doctors at Primary Children's Hospital said that would have been one of the first signs of this LCH. Travis told me last night that there are only about 50 cases of this in the US. It is so rare, that is why doctors miss it. When Travis and Haley can, I would like to see them put something together with all the symptoms. We can email the information around to everyone to help bring more awareness. Also, to help make the doctors more aware of it. If the doctors could have caught this earlier her case could be much better. It is just so new so they don't know.
Thanks for doing the blog so people can keep up on everything. Travis had me bring the kids up there so Him and Haley could come outside and see them. It was good for the kids to see them and be able to ask questions. They had a really good visit. I may have a few pictures that I can forward you.
Monday, September 7, 2009
Ari's Updates for Monday
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

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.
Saturday, September 5, 2009
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.
Thursday, September 3, 2009
And here's Lane...
Wednesday, September 2, 2009
Another accident streak for Madi
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.
Wednesday, August 26, 2009
St. George Quickie
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."
Monday, August 24, 2009
Dinosaur Tracks
Thursday, August 13, 2009
Better to give than to receive
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.
Monday, August 10, 2009
Kid Chat
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.
Saturday, August 8, 2009
Star Trek...and the next generation
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.
Tuesday, August 4, 2009
Just Stuff
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.