chicken pox and santa claus

Santa Claus-
One of our holiday traditions includes visiting Santa at the local Mall. This was Asher's first trip to see Santa. This year, we not only saw Santa, but Mrs. Claus as well. Abbie made sure she listed her must-have gifts on a letter to Santa.
Chicken Pox-
We usually alternate between my family and Sarah's family for our Christmas day celebrations. This year we had planned on visiting my Mother and entire family in Manhattan. In the few days leading up to Christmas, Jason's 2 daughters contracted the chicken pox. We didn't want Asher and Abbie to have the pox yet as well as my risk for contracting the shingles, so we unfortunately had to change our plans.
Joe's back-
Although we had to change our plans at the last moment, we were able to spend Christmas Eve and Christmas with Sarah's family, including her brother Joe, who traveled back to the States from Prague. Good to have to back Joe!
Chicken foot-
In honor of the Christmas out break of Chicken Pox, we played a dominoes game, called Chicken Foot. In past years it has been Texas Hold 'em, but this year it was Chicken Foot. It was fun and didn't require much brain power. I highly recommend it.
The Littlest Pet Shop-
This years toy was the Littlest Pet Shop. I enjoyed finding the little pets on Abbie's wish list- chinchillas, turtles, cats, dogs, lady bugs, etc. Its fun to join Abbie in her passion for these small toys. She has never been "into" baby dolls or Barbies...its always been animals.

waiting for christmas

The days leading to Christmas are fun: Shopping. Christmas songs. Cookies. Snow. Parties. fires. And the anticipation of gifts. Similar memories I have from childhood I am now reliving through Abigail's excitement. We always place some gifts under the tree several days early and Abbie loves seeing the gifts under the tree! She has searched through the presents and moved them around and placed them where she thinks they should be. I love buying her gifts almost as much as she love receiving them. Her enthusiasm for celebrating Christmas is obvious. This excitement often overflows in song and dance. Below is an impromptu performance:

OUR DANCING KIDS!

we've been having fun watching our kiddos dance. asher has been loving his 'johnny jumper' and gets himself high off the ground. we decided to have some fun and tape him jumping... adding the sound of tap shoes to make it even funnier. the red socks make it even more silly. enjoy a short video clip.

abbie was in her first dance show today, with her class from 'leigh's school of dance'. it was the christmas show and her song was 'i love you santa claus'. she is so funny, waving at us when she spotted us, but still so focused on doing the steps and motions correct. in the music the voice says the dance steps, which is what you can see her saying... sway 2,3,4 - bounce 2,3,4 - boogie woogie, boogie woogie, jump out jump in, half way turn... her little brain was really working! i started dance when i was about 5 years old, and did well remembering all my steps. abbie is following right in my dance steps. enjoy a low quality video from the dance show today.

remembering aunt ann

over the thanksgiving holiday we were blessed to see our aunt ann one last time. the Lord called her home wednesday night after giving us a great day with her. our whole family was together, except for my brother who lives in prague, and all 13 of us got to enjoy an evening of fun and a great dinner together.

aunt ann and uncle jack traveld from omaha, which they do often. our family celebrations always include them, as they are the only extended family (on my side) we see. they do not have any of their own children, so we were like their children, and they were a big part of everything in our lives.

aunt ann loved to shop. she could find a bargain anywhere and was so good about sending packages to abbie and asher just for fun. abbie said she will miss receiving these unexpected gifts and is now with Jesus. abbie asked us "when will she come down?" she understands that heaven is a place for people who love jesus, but wants ann to return to earth with Jesus during his second coming. For now we will have to wait and we miss her until we see her again. it is still a shock but we are learning to understand it.

my mom is having a hard time losing her sister. i think it is a little scary for her, because aunt ann died the exact same way their mother died... a sudden heart attack after pains in her back. we'll be working on getting moms heart in good shape.

throughout all of this i am reminded of the importance of living in the moment. i regret not taking my camera with me on wednesday, to capture the last good times. i had it in the car, but didn't want to carry it. i'm sad that i didn't. i am disappointed in myself that i didn't share more about what abbie was doing at school, and that she started dance class with some of the money they send us. i wish she knew that. i'm sad that i planned to wait until tomorrow to talk with her. it is important to remember that we never know how life will go and to make the most of every moment. it is sad that it takes life changing events like this to remind us.

don't wait to start rejoicing this holiday season. celebrate every day and say 'i love you' as much as possible to as many people as possible. write those thank you notes and e-mails that have been piling up. make that phone call. help that friend who is in need. i think we all wait for the perfect time and sometimes that time never comes.

we are so thankful for all our friends and family who love us and share life with us. may we never take you for granted.

we love you.

homemade yumminess

today i went over to my moms to make a big supply of babyfood for asher. my two sisters were there and we all enjoyed a day in the kitchen. leah made fudge, mom made her chocolate chip bundt cake and rachel helped us all. i've had friends who made all their baby food, and with money being tight right now, i thought i would try it. it was SO easy... just time consuming. i have green beans, asparagus, squash, carrots, pears, bananas and applesauce. i put them in ice cube trays, which are 1 oz. servings, and when they are frozen solid will put them in freezer baggies. it should last 3-4 months and cost me about $35. pretty good deal! we'll see what asher likes the best!

medicine adventures (part one)

My journey with cancer requires that I consume potent medicine for pain management. Methadone is one of these medicines that is a necessary part of my routine and it controls the bone pain in my hip and sacrum. I have constant uncomfort that cannot be alleviated without it I have noticed that this medicine is different than other medicines, in that it has more rigid rules. First, it can only be presented to a pharmacist with the original hand written script; therefore it cannot be faxed or phoned. Also, unlike many medicines which allow you to refill it a number of times, I have to have a new hand written script for every refill. Finally, my insurance will only permit a new refill a few days before my current one is about to expire. This can be a pain in the you-know-what, especially if you are about to run out around the same time you are leaving town for a vacation and you are not allowed to refill the medicine. It’s a hassle but I live with it.

Last month, following an uneventful and routine visit with my oncologist, I received a new prescription for Methadone. Although I had 3 more weeks remaining on my current Methadone prescription, my doctor gave me a new script so I would not have to travel back to the cancer center just to pick up a prescription. Last Monday, I had three days of Methadone remaining so I looked for my prescription and I could not find it. The following day, I thought, well maybe I already dropped it off at my pharmacy? They did not have it. I looked through a pile of papers where I would have placed it. I could not find it. The following day I had one full day of pills remaining so I searched through every piece of paper, every recent paid bill, unpaid bill, I even looked in every drawer, and coupon pile. I searched every possible location. I did not find it.

It was now Friday, I had one pill remaining (I use 3 pills per day). I called my nursed and asked for another prescription-something I have done many times before. I did not hear back from the nurse and wanted to get the script before she left for the day so we drove to the cancer center in Shawnee Mission. After we arrived at the cancer center, I was shocked to discover that my nurse would not provide me with a new script until I filed a police report for my lost prescription. I was a little shocked by this. It was 2:45 and my nurse was leaving for the weekend at 4:00. I was a little worried.

We asked for the location of the nearest police dept. Only a half mile away from the cancer center…wonderful! We arrived at the police dept and spoke with the officer at the window. Our very brief conversation informed us that we would have to file a report at the police dept in our city of Olathe…Oh No. It was now 3:15 and there was absolutely no way for us to drive back to Olathe, file a report, and drive back to the cancer center by 4pm. No pain medicine all weekend...I totally freaked out!

To be continued…

premature celebration

I was interrupted and notified late last night that I celebrated prematurely. I was Interrupted while I slept and rudely notified by my nerves that my nerve pain is still a problem and unfortunately still a problem. Similar to the pain in April and May, the nerve pain intensified every hour and made it impossible to sleep. Needless to say it was a terrible night and my hope that my hip has improved has been diminished. I can not tell you how disappointed I am about this turn of events because I have been feeling better the last few weeks. This radiation treatment was my only hope at really improving my situation. I am back on Lyrica (Medicine for nerve pain) and hopefully I will not gain any more weight. I have been a 30" waist all my life and I recently bought 2 pairs of size 32" jeans...I would hate to out grow these any time soon. pray for us.

And behold he could walk

And behold he could walk-no, not Asher. I am off crutches and have down sized to a cain. I can finally walk and bear weight on my hip but it continues to be tremendously sore. Its an ouch with a little bit of Ahhh. I will be starting physical therapy to assist in the healing process. This recent dose of radiation has improved my nerve pain and as a result I have been able to quit the pain meds for nerve pain. I am very thankful to be off of this medicine because along with drowsiness and dizziness and additional side effect was weight gain. I have been the same weight for years but the last 6 months I have packed on 25 pounds of pure fat. As a result, my pants no longer fit and a new wardrobe is not in the budget...thank you LYRICA.

As winter approaches, snow and ice will present a very real hazard for me. Slipping unexpectedly on ice was a painful problem for me last winter and and the same will be true this year. Any small slip could spell trouble for my hip (nice rhyme eh?). We are keeping a watchful eye on the other areas in my body. The tumors in my lungs are not presenting any symptoms yet and so I will not be receiving any more radiation treatments for now.

Farmer Abbie and Asher the Cow

happy halloween

happy halloween! this year abbie couldn't decide what to be. "there are so many choices!" she would say. but as soon as my mom found asher a cow costume she said, "i know! i will be the farmer!" so she is. and as a farmer should, she milks the cow. asher is so willing to let her do her thing, actually looking like he's enjoying her pretending to milk him. what will she think of next?!
Abbie made out like a bandit with two overflowing baskets of candy. We did some trick or treating with friends and then returned home to pass out candy to our friends. It was a good night and a lot of fun for the kids. Now, what can we do with all this candy we have!!??

asher in action

hello friends. i am so proud of myself, talking and laughing and rolling over. i was having a great day today and thought i would show off some of my skills. with a little help from my mom, i have accomplished the roll to the belly. i don't love being there for very long, but it feels good to be able to do more than just lay on my back. enjoy a few new video clips of my mad skills. the sound isn't working right, anyone know what to do?

prayer and a caterpillar

During our Pumpkin patch adventure we found a small fuzzy caterpillar. Abbie was delighted at her discovering and decided to bring him home. We stoped for some delicious hamburgers at the Loch Lloyd Club House but didn't want him to escape while at dinner so we placed him in an empty water bottle. When we arrived home I spilled the insect out of the bottle only to discover that he was accidentally water logged in the bottle. I explained to Abbie that he had died and she instantly began crying over the loss of her brief relationship with her new pet. I attempted to revive him but after 4 hours of no movement I declared him dead.

To my surprise, the next morning the caterpillar was alive and crawling around on the counter top. I immediately shared the good news to Abbie and she responded that she had prayed to Jesus that he would make him alive and he did. Abbie was not surprised at all because she believed her prayer would be answered. Her matter of fact faith was inspiring.

pumpkin patch

We enjoyed a chilly afternoon at Johnson's farm pumpkin patch with Papo, Gigi, Leah and cousins Wyatt and Cassidy. Abbie enjoyed feeding the goats and seeing many more smelly animals: horses, cows, pigs, piglets, bunnies, and chicks. There was a barn completely filled with hay for the kids to jump around in. We were pulled by a tractor to search for the perfect pumpkin. I already had the perfect pumpkin (Asher) so Gigi and I sat in the tractor while Papo, Sarah and Abbie looked for pumpkins-as you can see Abbie found two.

Lion King

We recently had the privilage of enjoying the broadway version of the Lion King at the Kansas City Music Hall. A friend of ours gave us three tickets in the third row. We have attended musicals before but usually we are in the cheap seats near the back. It was wonderful actually seeing the actors facial expressions. Abbie wanted to share her experience:

I went to the Lion King. I sat close to the front. The animals came downt the isle but I didn't see the elephant. The Monkey (Rafiki) was silly and rose the baby lion up. Zazu, the bird, was very funny and was trapped in bones. I like the first song (Circle of Life). The worthog the the little guy (meer cat) were silly and ate bugs. They found the baby lion (Simba) and sang a song, Akunna Matata. I was hidding in mommy's side because of the scary part with the Hyhiennas. They were trying to be in an army with their Hyenna friends. Simba came back to the rock and was fighting over the mean lion. Simba and Nala had a baby.

Economic Meltdown

Over the last five months and especially the last four weeks, we have witnessed an economic meltdown. In the wake of record oil prices and mortgage foreclosures, many bedrock financial institutions have imploded. Wall Street has adversely been affected with many record breaking single day loses. I, along with many Americans, have watched our retirement portfolios drop nearly 40%. And if we find ourselves with possible unemployement or a disability, our foul circumstance becomes even more putrid. In this volatile economic environment, while our presumptive presidential nominees are promoting their solutions of how they will repair our economy, it continues to cumble. And it appears government bailouts are too little too late to prevent our financial hemoraging.

Government intervention may ease our fears, but I am reminded of an important truth; Our hope in difficult and uncertain times caused by economic hardships, prolonged illnesses or broken relationships, is in God’s promises and power to provide. Political rhetoric or the size of our bank account may provide temporary comfort, but a lasting peace from an eternal hope comes from Christ alone. But we have to believe and this is where I find myself. At the very moment my senses are being assaulted by dire circumstances but the Lord's words of Life are instructing me to trust and believe in spite of my feelings and convincing me of something different.

baby in red

when you have a snazzy red outfit you should be on a snazzy red couch. and here he is... looking so cute and so happy. he's been called 'bubba chunk' lately, and at 17.5 pounds, has earned the name. we are in love with our son and have so much fun as a family of four.

working on thankfulness

we have a new chart starting at our house. it is the thankfulness chart, for abbie. we are working on her attitude and for some reason the chart really works. so this morning when she and dad went to get doughnuts (on tuesday? why not!) she came home and told me she had a good attitude about the ones she selected and was not greedy for more, then asked me to put her happy face on the chart. i did and she was pleased. as we were all enjoying our breakfast james told me sometimes i was smelly when i stayed in my pjs all day (yesterday) and abbie immediately said, "i think dad needs his own chart. that was not very nice." we all laughed and i thought seriously about making daddy his own chart... she is a smart girl. we are so thankful to be able to have mornings together, eating doughnuts, learning life lessons and laughing together. we have so much to be thankful for.

I had several follow-up appointments along with a PET and MRI scan this week. While driving to the cancer center on a sunny Thursday morning, I felt a little nervous. My concern was NOT due to the crazy drivers zooming by, but because of the results from my recent scans. After playing the waiting game and patient room shuffle, the doctor entered the room. He gently placed his hand on my shoulder and asked, "Is anyone here with you today?" Immediately I thought to myself, "Oh no, he has some really bad news and I need someone here for support." Why did his question fill me with fear? First, the doctor has never placed his hand on my shoulder and second, I am almost always alone. The PET scan shows cancerous activity in my entire body and the MRI was of my head. I have not had any scans of my head and was concerned there might be some new developments in my head or worse brain. By the grace of God, the results: no new areas or major changes. We also decided to postpone chemotherapy.

We love the circus-words from dad and abbie

The circus was in town. Did you make it to The Greatest Show on Earth? It is so much fun! I never had the privilege of attending the circus when I was young. Three years ago a friend bought Me, Sarah and Abbie tickets for the opening night at Ringling Brother and Barnum and Bailey Circus. It was not my idea, I didn't have any expectations and frankly, I was going for the sake of Abbie. But one thing was certain, I loved the circus! Furthermore, my love for the circus was not simply a one night stand, but rather was the beginning of a long loving relationship. After this pleasure filled night, I knew I would attempt to go the following year, and we did. I also knew I wanted to attend the circus this year (and had plans to do so). Honestly, I feel a little embarrassed of my enjoyment for the circus. Perhaps, it is because the circus seems only for children; or maybe it's that clowns are not very sophisticated.

I don’t favor any one aspect of the circus but what makes the circus special is sum of its parts. Lets be honest, clowns alone are a little creepy; animals can be seen at a zoo; and Cirque Du Soleil has more amazing acrobats. The circus’ appeal is its many unique performances working together to create a sensory experience that makes me feel, “Wow.” And “look at that,” and “this is fun.” Mostly, I love to feel like a kid, forgetting for a moment what it means to have responsibilities, commitments, and worries. I also love to experience the circus through the eyes of my daughter. It is fun to observe Abbie as she experiences the awe and wonder of the circus. Let me allow you to experience the circus in Abbie's words:

I went to the circus with my friends, Maddie, Jack, Kate and mommy. I ate a snow cone, popcorn and pop. I saw elephants, tigers and dogs. The master slapped a stick and the tigers jumped down from the stools. The elephants marched in circles and circus ladies rode on them. Bello was a craaazzy clown. Then he rode a bicycle, just kidding. Then circus was called "Bellobration." He like a girl in the circus and gave her flowers. He did lots of fun and crazy things. I love the circus. The circus was fun. I want to go to the circus next year.

"...and he was limping because of his hip." Gen 32:31

This summer was an enjoyable summer excluding one continuous problem: I had royal pain in the acetabulum (ass-e-tab-u-lem). For all you human anatomy buffs, you know this refers to the cup-shaped socket of the hipbone, into which the head of the thighbone fits. The cancer in my left hip and sacrum has been problematic for more than 3 years and this problem has been especially evident these last five months. I have had my “normal” bone pain but recently I have been experiencing a “new” and excruciating nerve pain. The only relief from this nerve pain, outside of more drugs, is radiation. However, I have already received my limit of radiation treatment in this area. Therefire, my only option is Cyberknife radiosurgery. This is an advanced technology which delivers radiation in very precise beams of radiation.

I finally received this treatment a few weeks ago. Following my final treatment, I became unable to stand or bear any weight on my left leg. If I place even slightest pressure on my leg, there is an immediate and severe pain in my hip joint (groin area). I have inquired about a hip replacement and others have asked me about it as well. A hip replacement, common among senior citizens and athletes, would be the surest solution and fastest way to fix my hip pain. However, in my circumstance a hip replacement is not an option because there is no healthy bone to attach the false hip to. My only option is time. As the cancerous bone dies, the normal bone will repair and heal itself. This is why I have to stay off of it and this means crutches for at least two months. The orthopaedic oncologist has also recommended resuming Zometa, a monthly bone treatment which helps strengthen the bone (I received Zometa from 2005-2007).
So far, the Cyberknife radation treatment has helped lessen my nerve pain. Amen! With one problem solved, another danger is increased. My most recent conversation with the othropaedic oncologist revealed the importance of protecting my hip joint. The peril of my current situation is the risk of fracturing my hip. If I fracture this bone I will be in serious trouble! As I shared above, a fracture would be impossible to repair (hip replacement) due to the cancerous and damaged hip bone; furthermore this would cause tremendous pain and disability. The good news: As long as I walk with crutches and keep from bearing weight on my left leg, I should be okay. Ultimately, this means I will need assistance with even simple activities. My disability places a greater burden on Sarah, please pray for her.

a word from abbie...my chinchilla

This is my chinchilla, Chin-chee. Chin-chee looks like a fuzzy little rabbit. His color looks like gray and black and his belly is white. He puffs in and out (breathing). And he eats one raisin every day, [along with hay and other food]. He lives in a cage and he hops around in it. Chin-chee has a wheel and he hops around in it because he needs exercise and practice. He has a large plastic ball we put him in and he rolls around in the basement. He has little feet but he jumps really far and high. Sometimes I grab his tail and pet him (when she is able to catch this chinchilla). I pet Chin-chee when he lays down and he is really soft, but sometime he bites me. One time he bit me on my arm and I cried. I love Chin-chee because he is my pet.

"blessed by misfortune"

While enjoying an evening of watching the Republican National Convention (yeah, really exciting night), I was struck by a comment from presidential candidate, Senator John McCain. He said he was "blessed by misfortune" as he referred to the five and a half years he spent as a prisoner of war in Vietnam. John McCain was hitting on a profound truth which really resonated in my heart. Often times when people refer to the idea of "blessing" you often hear about having good health, an increase in material wealth, or the perfect job. Indeed, all of these things are a blessing. However, poor health, a desperate need for more money and inability to work may equally be a blessing from God. They are not a blessing because they make our lives easier rather they are a blessing because they make us more attentive to see God at work in and around us.

My battle with cancer is not a mystery with most who know me. My cancer is currently in parts of my spin, sacrum, hip, and head. The cancer in my sacrum and hip is eating away at my bones and is also interfering with the nerves in this area-this can be extremely painful. Because of this pain, I have had to visit the ER on three separate occasions since April, most recently last Friday. Now on crutches, I am even more needy. Yet, I have been "blessed by misfortune." Sarah and I have been on the receiving end of God's grace. Many friends from church and in our neighborhood have mowed our yard, provided meals, cared for Abbie, and even given us some finacial assistance. Whats more, we never had to ask for help. We experienced the very best of living in community with others. In spite of misfortune, we have been blessed. Thank you to everyone who has been a blessing to us this summer.