Sunday, August 30, 2009
Lucas
I wish that I knew how to write eloquently so that I could express how I really feel at this time but I don't so I will try my best. The cute family we met in the surgery waiting room at Primary Children's while Kate was having her tumor removed has just gotten bad news. Their little boy Lucas who is one month older than Kate has come to the end of the road in his battle against cancer. In an MRI they did on Wednesday they found that the tumor has spread to his brain and there is nothing else the doctors can do. They are now at home spending the last few moments of his life together as a family. Over the past few months Shannon (his mom) and I have become good friends. We have vented to each other about doctors, cancer, stress, money and have shared with each other our strength and faith to get through this time. The agony and pain she must be experiencing knowing she is losing her baby continues to haunt me all day long. I respect her for her strength and I pray that our Father in Heaven provides her with comfort and peace. I just ask that everyone have a little prayer in their heart for the Nelsons and they go through the next few hours, weeks and months. To read Lucas' story go to nelsonsforever.blogspot.com.
Wednesday, August 26, 2009
Saturday, August 22, 2009
Newport Beach
Another FABULOUS year at the beach. We REALLY missed Ty but still enjoyed our week in heaven. There is nothing like walking off the plane and smelling the salt and humidity in the air.
First airplane ride. We got in trouble for letting her sit on the tray.... woops!
I am embarassed to say how many shakes I had from Ruby's not to mention the parmesan bleu cheese fries, the cinnamon swirl french toast and the bleu cheese hamburgers. Wow! it is a good thing we were only there for a week!
Is she not to die for?
Kate and I at the tide pools....
Kate's cute cousin Maggie
Kate's new pose with her uncle Tyson
Her hair is crazy! I love this picture cause her hair is glowing! It really will NOT lay flat....
Kate has OFFICIALLY taken over our blog. It probably gets annoying but I can't take enough pictures of that cute little face!
I am embarassed to say how many shakes I had from Ruby's not to mention the parmesan bleu cheese fries, the cinnamon swirl french toast and the bleu cheese hamburgers. Wow! it is a good thing we were only there for a week!Is she not to die for?
Kate and I at the tide pools....
Kate's cute cousin Maggie
Kate's new pose with her uncle TysonHer hair is crazy! I love this picture cause her hair is glowing! It really will NOT lay flat....Kate has OFFICIALLY taken over our blog. It probably gets annoying but I can't take enough pictures of that cute little face!Thursday, August 6, 2009
Don't leave us!
We are so sad that our good friends (Ty's cousin and practically brother) Alex and his cute wife Jane and their adorable little boy are MOVING. We have had so much fun meeting for lunch, dinner, going on walks, shopping, chatting, and just hanging out with them. We sort of did one last hoorah and went up to our cabin in Midway. Even though it was short it was still fun. We are going to miss them alot and hope they will move back someday soon!!!!
* The restaurant was really busy that night and were all out of their normal height chairs so they asked if this one would work. It was hilarious having Johnny looking down on the table. It definitely takes the name "height" chair to a new level!
* The restaurant was really busy that night and were all out of their normal height chairs so they asked if this one would work. It was hilarious having Johnny looking down on the table. It definitely takes the name "height" chair to a new level!
COUSINS
One day Brecken and I were in charge of the three little rugrats: Mark, Claire and Kate. We decided we needed to get out of the house and went up to the outlets. Yes it did get hairy with three babies, only two adults and only two single strollers. But we made it out with only one diet coke spilled on the floor in JCREW and one spilled on the floor in the suburban. Thank goodness for diet so it wasn't too sticky! :) These pics were taken on the way up. Kate could not believe she had TWO friends in the back with her.
This is Mark's sticky cheeto hand holding Kate's little hand. These three are going to be such good friends! 
This is Mark's sticky cheeto hand holding Kate's little hand. These three are going to be such good friends! Kate looks up at me like "Wow mom this is fun!"
I'm getting old.....
For my birthday we did the usual Chapman birthday celebration and all went to breakfast at ohop. The white chocolate macadamia nut pancakes are amazing! Then that night Ty and I went to Michaelangelo's ALL BY OURSELVES. This hasn't happened for at least six months. One of the things no one ever told me about having children is that you eat differently. I never get to just sit down and enjoy the meal. I am always scarfing (sp? maybe not even a word....) my food as fast as I can knowing Kate is going to be needing me at any moment or trying to juggle her on my lap as I eat. So it was really fun to go out just the two of us. Thank you to meme for babysitting.
*These are the three youngest trouble makers in the family. Notice behind them are the bigger kids who got to sit at their own table.!
Then on Sunday we went up to my Grandpa's cabin in Silverfork and had a picnic with the family. It was so beautiful up there!
Wednesday, July 29, 2009
Tuesday, July 28, 2009
6 Months
Kate is now 6 months old. I know most people say "where has the time gone?!!!" but my pediatrician and I were just laughing yesterday that she seemed to have the LONGEST four and five months of any of his patients. :) But we are just glad to be where we are and enjoy her every day. Believe it or not but she is in the 75% for height and the 20% for weight. You would never think that though looking at the rolls on her thighs! She is starting to do alot of fun tricks:
This doll my mom gave to her when she was in the hospital and she LOVES it! She loves to suck on her arms and hold on to her when she sleeps! I think it is so cute!
At the last minute we decided to join the Perry's on their annual trip to Lake Powell. We decided we needed a break even if it was just for two nights. Kate got an A+ on her behavior. I was really worried about her especially at night and everything went relatively smooth. It was really alot of fun!
Taking a bath in the houseboat sink. She loved it!
She sits up on her own and plays with her toys
She has one tooth and another one on the way
She loves to laugh and is very ticklish
She eats all of her fruits and vegetables but doesn't really like rice cereal
She has a really high pitch scream she does when she gets really excited
She talks her own little language... especially in the morning when she is playing in bed with Ty and I as we try to catch a few more minutes of sleep
She sleeps through the night....... oh wait no she doesn't. She acutally wakes up every hour about. I guess she just misses her mom too much!
When she gets really hyper she shakes her head back and forth.... it is hilarious!
We love her and her cute personality!
This doll my mom gave to her when she was in the hospital and she LOVES it! She loves to suck on her arms and hold on to her when she sleeps! I think it is so cute!At the last minute we decided to join the Perry's on their annual trip to Lake Powell. We decided we needed a break even if it was just for two nights. Kate got an A+ on her behavior. I was really worried about her especially at night and everything went relatively smooth. It was really alot of fun!
Taking a bath in the houseboat sink. She loved it!
Tuesday, July 21, 2009
LCH
Well I guess I better update everyone on the status of Kate and her disease. First, I would just like to thank everyone for all of their prayers. I know that our Father in Heaven is listening and has been there for us throughout this whole ordeal. So thank you thank you thank you!!
*** WARNING: THIS IS GOING TO BE LONG. SORRY IF THIS BORES YOU BUT I HAVE SO MANY PEOPLE ASKING FOR AN UPDATE AND THERE ISN'T REALLY A SHORT WAY TO DO THAT.
BACKGROUND ON THE DISEASE
LCH is an extremely rare immune system disorder. Langerhan cells are white blood cells that fight off skin infections. In a normal baby the langerhan cells come to fight off a skin infection and then go away once the infection is gone. In a baby that has this disease the langerhan cells are immature and continue to reproduce more and more of these cells out of control. This is where the tumors occur. This can occur anywhere in the body. However, the most common places are on the bones and in the skin. In infants, usually under the age of two it can get into their major organs such as lungs, GI tract, liver, and spleen which in turn causes the organ to fail which makes this disease extremely scary and life threatening. The treatment that they use is chemotherapy and strong steroids to kill off these immature white bloods cells. The treatment is usually quite successful but it has to be done for a year to make sure they are all gone and the treatment has alot of yucky side effects. The other problem is that it is very common for the problem to come back after treatment has stopped. So not only is this disease so rare that it affects only 1 in every million babies but then the babies that have it are all so different. The disease can range from diaper rash to liver failure! Ya I know you are probably confused cause to be honest I am still sort of confused and I swear all the doctors are as well! Thank heaven for Primary Children's! Our oncologist has dealt with this before and is in contact with the "LCH master" who is a doctor in Texas that has done a billion studies on it and every patient in the USA with this disease practically goes to him.
KATE'S SCENARIO
So here is where Kate falls on the spectrum at this time. We have done a million blood tests, urine tests, x-rayed every single bone in her body, ct-scanned her whole body, and had all the dermatologists and residents in the whole hospital look at her skin. Every single test has come back clean!!! Can I say halifreakinlujah!!!! The LCH problem has only shown up in her lymph nodes and we have already cut out 80% of that so all we are going to do at this time is just watch her like a hawk. The fact that it isn't in any of her serious organs and that it is only in ONE of her "not so scary" organs they are hoping it will just go away on it's own. Every four weeks we will go in and test her again to make sure it isn't showing up anywhere else for the next few years. The doctor's say that the mother is usually the one to catch it. When I am shampooing her hair I am supposed to feel for any bumps or holes in her skull or if anything seems unusual I am supposed to bring her in. The second they spot it in any other spot of her body even if it is just a skin rash (that is biopsied and comes back as LCH) she will start chemo immediately. So you are asking yourself is she just going to live every second wondering in fear if it has spread somewhere else? Every time she gets a tiny bump on her skin does her stomach drop? Every time she spits up a little bit does she panic? Or even better every time she cries does her heart race? Well the answer is yes. BUT I am so thankful. I would way rather have this worry for the next few years than to watch my tiny baby go through chemo and steroid treatment. (The black rings around my eyes is evidence of my stress. I am aging exponentially!) I have just decided every time I start freaking myself out I have to remind myself that it is in the Lord's hands. He knows if it is going to go somewhere else and if it does it will be in His plan and there is nothing I can do about that. Yes, having this kind of an attitude is hard to do but prayer has become one of my best friends lately and hopefully down the road we will look back on this time of our life as a blessing that brought our little family closer together and made us value our lives more. I love my sweet Katherine and I couldn't imagine my life without her. I am so thankful for eternal families and the plan of salvation. Every night as I rock Kate to sleep I sing to her "Families are Forever" getting choked up every time. I know I have said this before but I have such a better perspective on life and I am just so thankful for every minute of every day! I love you all and I can't thank you enough for all you have done for us. Please continue to pray for baby Kate and hopefully we will just continue to test and test test and find nothing!!!! :)
*** WARNING: THIS IS GOING TO BE LONG. SORRY IF THIS BORES YOU BUT I HAVE SO MANY PEOPLE ASKING FOR AN UPDATE AND THERE ISN'T REALLY A SHORT WAY TO DO THAT.
BACKGROUND ON THE DISEASE
LCH is an extremely rare immune system disorder. Langerhan cells are white blood cells that fight off skin infections. In a normal baby the langerhan cells come to fight off a skin infection and then go away once the infection is gone. In a baby that has this disease the langerhan cells are immature and continue to reproduce more and more of these cells out of control. This is where the tumors occur. This can occur anywhere in the body. However, the most common places are on the bones and in the skin. In infants, usually under the age of two it can get into their major organs such as lungs, GI tract, liver, and spleen which in turn causes the organ to fail which makes this disease extremely scary and life threatening. The treatment that they use is chemotherapy and strong steroids to kill off these immature white bloods cells. The treatment is usually quite successful but it has to be done for a year to make sure they are all gone and the treatment has alot of yucky side effects. The other problem is that it is very common for the problem to come back after treatment has stopped. So not only is this disease so rare that it affects only 1 in every million babies but then the babies that have it are all so different. The disease can range from diaper rash to liver failure! Ya I know you are probably confused cause to be honest I am still sort of confused and I swear all the doctors are as well! Thank heaven for Primary Children's! Our oncologist has dealt with this before and is in contact with the "LCH master" who is a doctor in Texas that has done a billion studies on it and every patient in the USA with this disease practically goes to him.
KATE'S SCENARIO
So here is where Kate falls on the spectrum at this time. We have done a million blood tests, urine tests, x-rayed every single bone in her body, ct-scanned her whole body, and had all the dermatologists and residents in the whole hospital look at her skin. Every single test has come back clean!!! Can I say halifreakinlujah!!!! The LCH problem has only shown up in her lymph nodes and we have already cut out 80% of that so all we are going to do at this time is just watch her like a hawk. The fact that it isn't in any of her serious organs and that it is only in ONE of her "not so scary" organs they are hoping it will just go away on it's own. Every four weeks we will go in and test her again to make sure it isn't showing up anywhere else for the next few years. The doctor's say that the mother is usually the one to catch it. When I am shampooing her hair I am supposed to feel for any bumps or holes in her skull or if anything seems unusual I am supposed to bring her in. The second they spot it in any other spot of her body even if it is just a skin rash (that is biopsied and comes back as LCH) she will start chemo immediately. So you are asking yourself is she just going to live every second wondering in fear if it has spread somewhere else? Every time she gets a tiny bump on her skin does her stomach drop? Every time she spits up a little bit does she panic? Or even better every time she cries does her heart race? Well the answer is yes. BUT I am so thankful. I would way rather have this worry for the next few years than to watch my tiny baby go through chemo and steroid treatment. (The black rings around my eyes is evidence of my stress. I am aging exponentially!) I have just decided every time I start freaking myself out I have to remind myself that it is in the Lord's hands. He knows if it is going to go somewhere else and if it does it will be in His plan and there is nothing I can do about that. Yes, having this kind of an attitude is hard to do but prayer has become one of my best friends lately and hopefully down the road we will look back on this time of our life as a blessing that brought our little family closer together and made us value our lives more. I love my sweet Katherine and I couldn't imagine my life without her. I am so thankful for eternal families and the plan of salvation. Every night as I rock Kate to sleep I sing to her "Families are Forever" getting choked up every time. I know I have said this before but I have such a better perspective on life and I am just so thankful for every minute of every day! I love you all and I can't thank you enough for all you have done for us. Please continue to pray for baby Kate and hopefully we will just continue to test and test test and find nothing!!!! :)
Thursday, July 9, 2009
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