the sorell journey

a view from the service

2011-09-19T15:09:00.001-07:00

only when you feel ready... the friend who photographed james' service has posted a video on her blog. it is beautiful but brings tears. hard to watch, but so wonderful to watch. oh how thankful we are to have this documented. thank you becca spears for serving our family in this way.

http://www.wirkenblog.com/

the 22nd... its been two months

2011-08-22T07:57:00.000-07:00

we have survived the first two months of life without james. it has be very challenging at times, but overall we have done pretty well. abbie is back in school, starting 2nd grade, and has a fantastic teacher. i prayed that the Lord would place her in just the right classroom and she did get the teacher she wanted. i wanted to let her know about what's going on in our lives, so she can be in tune to abbie's needs and she wrote me the sweetest note back. she shared with me that her father died when she was 19, so she is aware of the heartbreak and struggle of losing someone so close. God knew that she would be perfect for abbie, and in this way, she knows even more what abbie is and will be experiencing. we are so grateful for that.
asher and i have been enjoying good time together, shopping and organizing and playing. it is nice to have one-on-one time with him and we laugh a lot! he is such a fun boy.
i have been doing well, adjusting to a good schedule for school, dinnertime and bedtime. getting the kids in bed early leaves me good time at night to work a little, watch some tv and get to bed a decent time. so far, it seems to be working out well for everyone.
i'm looking forward to getting back into some good Bible studies this fall. our community group is studying the book of James, after feeling led in many ways that this is what He wants us to do together. it is going to be good. and i'm joining 'the amazing collection' a wed. morning study at church that goes book by book through the Bible. it takes 3 years to complete and we're starting in Genesis. we do a full old testament book each week!! thank goodness james had bought the Bible on cd, so i can listen to the Word to stay caught up in the 'reading'. everyone who has done it says it is the absolute best study they have done in their lives. i am really excited to get into it.

thank you for continuing to pray for us, as we still need support and strength each day. the hardest times for me seem to be in our bathroom, getting ready, when things are quiet and i can picture him being there with me. it seems to be the most time i have to think, and i helped him so much in the mornings with everything, that it really brings back a lot for me. it is still hard for me to believe that I won't ever see him again, or do any of these things for him, but I get through it and am thankful that he doesn't need help with those things anymore. he is having the best time of his life, in the presence of our Savior and honestly that still makes me jealous. in time, we will share in it with him... until then, i will try to do the best i can with our kids, my personal walk with Christ and in my relationships with the people i love.

let's take the 22nd of each month to really try to focus on loving our families and friends, even when it seems hard, inconvenient, or a burden. i know we all want to do our best in loving others, but sometimes the 'duties' of life just keep that from happening. the phrase 'intentional living' was a deep theme of james' life, and i know we all need to keep being reminded of the importance of living that kind of life. i will do it... will you?

remembering...

2011-07-07T23:06:00.000-07:00

i have been so overwhelmed with love and encouragement from all of you. especially the good old fashioned MAIL in the mailbox! thank you for the cards, posts, emails and prayers. we have made the transition back into our home and are experiencing a lot of ups and downs, happiness and sadness throughout everyday. that is exhausting. but overall, we are doing well. it is very hard to actually grasp the fact that James is gone. but he is, and knowing that he is worshiping our Savior in heaven, with a perfect new body makes my heart just smile. as i look at photos of him in the last weeks, it is really obvious that his body was tired of fighting. he lost so much weight, but still looked as cute as ever to me. but he was tired. even these last photos that were taken our last night at home he tried so hard to smile and love on the kids... but you can see the struggle.
i share the following details with you, because i know you are interested. you've been so faithful to pray and journey with us it feels right to keep it going. i'm also going to try to post portions of his 'freedom service' too, so if you were unable to be with us, you can experience the incredible moment that was. to everyone who did come (so many i didn't get to hug) THANK YOU! it was an intense time together and i know it truly honored God as well as the legacy of James' life. i'm sure he would have been embarrassed to hear everyone talking about him, but it was such an awesome time to seeing how one person can really impact so many. he will be greatly missed.

i knew i would have a foggy memory of all that happened in the last hours of my sweet James' life so i asked my friends, kelly and sarah b., who were with me to write down how things unfolded. this is what happened in our last moments together...

"Tuesday morning, June 21st, James woke up very tired. He hadn't slept well the night before and didn't have the energy to start the day. Even eating breakfast was exhausting for him, and he never quite caught his breath afterward. As the day progressed, his struggle to breathe worsened. His fatigue was overwhelming. James told Sarah he was tired of fighting and just couldn't do it anymore. He told Sarah, "I think it will be better for everyone if I just go." Sarah began communicating with family and friends their need to come and be present to offer prayer and support. Around 5 p.m., people started arriving at their home.

Everyone was able to have time with James - - to pray with him, to share with him their commitment to care for his family, and to communicate how much he was loved. Abbie's grandparents took her to dinner and started the hard process of communicating to her exactly what was happening. Asher wanted to stay with his daddy. Sarah and James' brother Jason made a couple phone calls to Hospice and St. Joseph's Hospital to learn about some of their options for James' care. It was a clear provision of God that James' pain doctor was the one on-call that night. Dr. Morgan shared what the process would look like if James wanted to come to the hospital and allow his body to concede that his time was coming to an end. Around 10 p.m., Sarah and James were able to have a private conversation with their pastor, Nathan. Family and friends waited downstairs, asking the Lord for direction and wisdom. Nathan joined everyone downstairs and gave Sarah and James time to be together. During that time, he told her he had absolutely no regrets. They talked about the full life they had shared - - travels to Europe and Asia, Disnelyland, Colorado, family trips, and great memories. He looked her in the eyes and said, 'To live is Christ, to die is gain.'

Shortly before midnight, Sarah communicated that they had decided to go to the hospital. An ambulance came to help transport them to St. Joseph's Hospital. Everyone else followed shortly behind. Around 1 a.m. Sarah's parents brought Abbie and Asher up so that James could have time to say a very hard and sad goodbye. James was able to tell them how much he loved them, how sad he was to have to leave them, and how important it was that they follow Jesus all the days of their lives. It was devastating to hear Abbie cry out to her daddy, to tell him how much she didn't want for him to go - - but it was a precious time for their family and God was so present to offer His peace and hope. When the kids went home with their grandparents, James was again surrounded by his family and friends as Dr. Morgan came in to offer him some medications to help him relax before turning down his oxygen levels. People offered James encouragement. He asked to have Psalm 103 read. Songs and hymns were sung in worship and trust to God as we watched him drift into sleep - - songs including Great is Thy Faithfulness, Beauty from Ashes, I Could Sing of Your Love Forever, and All in All.

Dr. Morgan communicated to us that as his body was depleted of a strong, consistent oxygen supply, it would slowly start a process of shutting down. He didn't know how long it would take or how James would respond to the medications he was offered. It was important to James that the end of his time here was peaceful and not physically traumatic. Dr. Morgan committed to him to do everything he could, and he made good on that promise. His care for James was exceptional. God was so good to have him there for such a time as this.

Last good-byes were said and James was given medication to allow him to rest peacefully until he took his final breath. James went to be with the Lord shortly before noon on Wednesday, June 22nd. He was surrounded by his wife, his family, mentors, pastors, and friends who love him dearly. We prayed and thanked God for the gift of James Sorell as we entrusted his spirit to Jesus and sang "It Is Well with My Soul". As his friend Todd prayed shortly after James went home, we are so thankful he is now able to feast and walk and breathe and talk and have a fully restored body as he stands at the throne of grace. He will be dearly missed."

HAPPY VALENTINE'S DAY!

2011-02-13T23:10:00.000-08:00

i am sorry for the long absence on the family blog. there is so much to update on, that i never feel like i have enough time to do it all.... some day i will.

for now, enjoy some LOVE from our kiddos for valentine's day.
please know how much the love and support we have from all our friends and family is an incredible gift that keeps us going each day.

the random cards and gifts we continue to receive are such a blessing to us.
thank you to those who have reached out to james, with visits and kind words of encouragement.
he is in daily need of that and you are making a difference.
we LOVE you.

and we LOVE these little, silly kiddos.
they love each other and we are so thankful to share life with them.

my crazy babies

2010-12-22T12:59:00.000-08:00

Asher is a fun little boy with a fun personality.

I already knew that Asher was a crazy little baby

but it looks like Sarah is a little crazy too!

Its time for some RISK

2010-12-22T12:24:00.000-08:00

Our last game of monopoly lasted a very long time and we both had a lot of money, however I prevailed in the end with over $30, 000!
I thought it was time to move on to another one of my favorites: RISK, The Lord of the Rings edition. This game is a little more challenging to grasp becuase it requires strategy but she is doing well for a six-years-old.

our recent obsession

2010-12-09T11:58:00.000-08:00

I'm a gamer. I love playing board games, but until recently the games we played as a family were Hungry Hippos, Candy Land, Chutes and Ladders, Hi-Ho Cherry-O, Guess Who? and several others. But Abbie is a little older and a lot smarter, so now we can play more complicated games like Battleship, Sorry!, Monopoly, and Dominoes. I am even trying to teach her chess.

Recently, Abbie and I began a game of Monopoly, Star Wars edition. Our one game has turned into a month long Monopoly Marathon. We play a little bit every day until one of us wins and then we start over. Abbie loves to win! She exudes enjoyment from beating her dad. But on the other hand, she hates to lose! There has been a few times when she has had to face the inevitability of losing. When this occurs, occasionally, she protests and begins to cry. And its in this moment I try to teach her the life lesson that sometimes in life things do not go your way and you have to accept it and move on. We all hate to lose, but losing is a part of winning; we can not win if we don't play and its really fun to play. Currently I winning-SORRY ABBIE!

thoughts from the valley

2010-12-01T20:22:00.000-08:00

Thoughts from the valley by James Sorell 2010

No one remains unscathed by trouble or hardship. We live in the pursuit of happiness; and even though trouble lurks around the corner we are surprised when our pursuit is interrupted by tragedy.

Nine years ago, I was living a life of happiness, completely content. I was pursuing the life I believed God wanted me to live. I was happily married, content in my career, and sleeping soundly every night. When shortly before Easter, I was having what I believed to be a minor outpatient procedure, however when I awoke from the anesthesia, my wife informed me that the doctor had discovered a rare form of cancer involving my salivary gland, as well as the nerve controlling my tongue.

Since that fateful day, we have been on a never ending pursuit to eliminate this cancer from my body. Initially, our best bet to eliminate the cancer was to surgically remove the entire tumor and rebuild my jaw. After that life altering procedure we hoped that the cancer was completely eradicated. However, two years later we discovered the cancer had reoccurred in my head and spread to my lower spine. Due to its rare qualities, traditional chemotherapy was not a viable option, therefore it became clear that our best hope now was to control the cancer using radiation therapy. For several years when problems would arise from the disease we would treat the area with radiation. This method worked for five years but after 7 separate treatments of radiation, I have maxed out radiation in certain areas of my body; and the last 2 years I have used newer, but so far ineffective, forms of chemotherapy drugs, and now I have depleted any reasonable attempt to control the disease. Presently, the disease has again reoccurred in my head, lungs, and lower spine, resulting in a large fracture in my sacrum which is placing pressure on many of the nerve roots branching off of the spinal cord.

This year has been by far the worse year in my journey with cancer. We spent the first half of the year traveling to Houston once a week to participate in a clinical trial which gave me terrible side effects with little results. The second half of this year has been increasingly horrendous, spending sometimes on a daily basis in indescribable neuropathic pain. The pain has been so severe that all I could to in response was moan and weep in agony, crying out to God for relief. Because of the pain in my sacrum I have been unable to sit for 5 months, even for a moment, forced to stand using crutches for more than twelve hours a day.

With the help of a pain pump, I am not in level 10 pain every day, but my pain is still barely under control and so I continue to stand with crutches. I am losing hope that my current condition will improve. As my disease slowly progresses I fear the pain I will have to endure. Throughout this journey¸ Psalm 23 has continually been on my heart as a reminder that the Lord has been leading us through our perpetual valley, to places of provision and restoration. Lately, my thoughts have been filled with my life nearing its end. And when the nerve pain is at its worst I feel that death would be better by far. Yet in that moment, I am torn and I want to continue to live life with my wife and two children despite the valley we are in.

Lately, when all of life feels out of control and the valley has been so dark, so deep, reeking of death and when my pursuit of happiness is far beyond my reach; it’s ironically the one who personifies happiness who has been pursing me. I formally believed that our dark valleys would eventually end and be followed by a time of refreshment and blessing, but this has not been the case. The valley of the shadow of death in verse 4 is followed by, You prepare a table before me in the presence of my enemies; You have anointed my head with oil; My cup overflows. If I am the recipient of the Lord's overflowing blessing or the guest of honor at his feast, how then can I continue in a time of darkness? But the Lord’s hospitality invites us in for moments of refreshment and even now in our present circumstances we are blessed. The darker the valley, the brighter is the Lord’s overflowing provision! By means of our church family, I am continually reminded of His goodness and lovingkindness pursuing my family all the days of my life. When all hope is gone, my Great Shepherd reaches out and leads us. Right now the valley remains dark, but we feel like guests in the seats of honor with our church family. As I reflect on the past nine years, life has been hard but we thank God for all he continues to do for us and through us.

happy birthday wyatt!

2010-11-04T15:41:00.000-07:00

today we are celebrating the life of my little nephew, wyatt, who turns 5 today. we miss you dearly and can't wait to see you again when we're with Jesus too. these are the last photos i took of him, at asher's 2nd birthday party. he loved playing with the light sabers with his momma, smiling his huge grin. we miss you, buddy!

what we're up to...

2010-09-15T21:23:00.000-07:00

this week has been better... james is feeling less pain and able to sleep for larger blocks of time.

he still cannot sit down for very long, so we are hoping that will keep improving, so he can feel a little more normal. he is so tired of being on crutches to walk around all day!

i celebrated my 36th birthday and james thinks it is funny to point out that now i am closer to 40 than to 30... who cares!?? i will always feel like a teenager inside, sometimes still shocked that i am the mother of a first grader. how does that happen? i was so blessed by so many heart felt wishes and blessings from my oldest friends and my newest friends. it was a whole lot of love!

asher is talking up a storm, making full sentences that you can clearly understand. it is so fun to hear him react to things with 'big boy' thoughts. james started reading hop on pop to him and he loves the STOP- you must not hop on pop! it cracks us up to hear him try to read the rhymes.

abbie has been working on her handwriting and making new friends at school... it seems most of the new friends are boys, which isn't surprising. she's always had more boy friends than girls, but i didn't expect the 'change' in how she thinks about them to be so soon. though i know she doesn't really understand everything she is saying, she does understand love and that she wants to 'marry someone who is nice and funny like my dad'. so, in her class assignment she brought home today, i was impressed with her ability to correct the sentence with all the correct symbols. then on the back, they are supposed to write their own sentence using the word of the day. check it out, it is hilarious! [click on the image to see her handwriting!]

translation: i will have a crush on jack & tyler forever.

asher goes to school!

2010-09-07T20:28:00.000-07:00

really, a two year old going to school? well, yes! abbie went to this little day school when she was two until she was 4, and it really suited her well and did a lot to prepare her for elementary school. asher always was a little sad when we dropped abbie off at school, but now he gets to go, so he is alright with it.

today we were up and ready to go, with loads and loads of excitement!
he chose his favorite green hat [neen hat] and put on his backpack [bat pat] and we were ready to roll. his teacher is 'miss angela' and she lives in our neighborhood! there are only 5 kids in his tuesday class and 7 on thursday.
i am excited for him to get out and make some new friends and have some structured playing and learning time. i always feel bad when i am working and he is playing ball all alone... now he will have friends to play with.
here is a glimpse into the fun day he had!

http://www.sorellimages.com/asherpreschool/

first grade fun

2010-08-31T22:42:00.000-07:00

abbie has had such a great start to first grade, we are really thankful! i have a lot of photos to go through of all the activities of the first week, but wanted to post these two just for now.
the first one, she is excited to see her friends on the first day.

the second one is her participating in the fun run, a friday night activity hosted by the school.
it is going to be a great year!

back to the bottom

2010-08-31T14:12:00.000-07:00

it has been another rough weekend, with james not feeling well. he was doing so great, actually feeling great for about a month and a half. but while outside, he reacted to a wasp that flew towards him, and it really sent his back out of whack. and when that is bad everything else is bad.

he hasn't been sleeping much at all, because he is unable to sit or lay down without intense nerve pain shooting down his left leg. he describes it as 'being on fire' and there is no suffering through it.

today we spent the morning in the ER, trying to get some relief, but he is such a complex case, that no one who doesn't know all the ins and outs of his cancer is willing to do anything except give him a shot of narcotics. not that he isn't on enough drugs already...

so last night and today he's spent most of his time on his crutches, falling asleep standing up. this always makes me nervous because if he fell he would hurt himself much worse. so now, at 4pm, he is finally getting some rest. he isn't laying in bed, but he seems to have found an okay position to kneel in to close his eyes and recover.

it is hard to get anything accomplished with life or work during times like this, but we continue to have such a strong support group around us, helping with meals and kids. hopefully i will be able to get caught up with work one of these days, i really hate not being on top of things for my clients. but in the grand scheme of things, it is all about helping james make it through one more day, and providing the peace and love that our kids need through it all.

thank you for your continued prayers and support.
we are humbled and encouraged daily.

not so easy

2010-08-24T15:01:00.000-07:00

it has not been so easy around here lately. especially today. we grieve the loss of our aunt ann, who's birthday is today, along with the loss of little ezekiel (zeke) john. it has been a very hard year, filled with sadness and pain, loss and confusion. james has had one of the hardest years too, which adds to the challenge of getting through each day.

for me, it is so hard to really spend a lot of time thinking about all of it, because i just can't keep it together when i do. i know this goes for everyone who is involved, but it is always a part of our day, so you really cannot think about it.

this fall our community group girls are focusing on scriptures and studies about prayer, so i was going back through my beth moore study from this summer and found some great things to think on:
Psalm 34:17-19
¹⁷ The righteous cry out, and the LORD hears them;
he delivers them from all their troubles.
{"God's great deliverance in itself presupposes a trouble from which the person was delivered"}

¹⁸ The LORD is close to the brokenhearted
and saves those who are crushed in spirit.
{"God's closeness to the brokenhearted presupposes a difficulty that broke the heart. The depth of God's aid to the crushed in spirit presupposes the occurrence of something crushing."}

¹⁹ A righteous man may have many troubles,
but the LORD delivers him from them all;

God never promised to remove us from human experience. Pain is a part of that. Loss is a part of that. "God's delivering us from every ounce of trial will never develop the relationship that occurs when God shows Himself faithful right in the midst of difficulty, delivering us through it. That's where we come to know Him, to love Him, to appreciate Him."

One of my favorite songs is "You Hold me Now", and the lyrics are so powerful and give such a promise and good picture of what heaven will be like, when we will get to rejoice and be with these sweet souls we have lost.

http://www.youtube.com/watch?v=LX12vnPX60s&feature=related

Until then, we miss and remember them. And we struggle to get through the days and weeks, seeking to find joy and peace, and a new closeness with our Savior.

happy birthday mom!

2010-08-23T07:10:00.000-07:00

my sweet mom had her birthday last week, and we invited her over to be treated like a queen. never have we kids ever been in want for anything- from babysitting, to clean laundry, to fantastic meals out on their patio, to encouragement she has always given us exactly what we need. and we love her so much for who she is and how she loves us. she is the best gigi to our kids and they love her deeply (especially when she takes them on personal shopping trips!).

we had a great night of grilled pizzas and laughter, and then treated her to the new frozen yogurt shop by us. this was abbie's idea, and she was SO thrilled to take her there. it was a beautiful night, and we loved celebrating her!

thank you mom, for being the absolute best at absolutely everything. you make our lives better. you make our lives easier. you make life beautiful.
we love, love, love you!

FIRST GRADE!!!???!!

2010-08-16T11:10:00.000-07:00

can it really be that abbie starts first grade tomorrow?!! she is so ready, and i love seeing her excitement. we were able to log on saturday to finally find out who her teacher is and the suspense was fun! she will have mrs. rodriguez, who according to abbie, has purple hair... 'well, it's really dark black and sometimes looks purple.' we get to meet her tonight at the 'sneek a peek'.

to celebrate this milestone, we did a fun little session at the studio, and here are a few of my favorites of little miss abbie. so full of energy and love, creativity and attitude. we love you, sweetie!

sweet zeke

2010-08-14T15:39:00.000-07:00

today is zeke's first birthday, and he is celebrating with Jesus. my sister leah is undoubtedly having a difficult day, thinking back on her little baby that she lost when he was only 10 days old. our hearts still ache for her and tom and little cassidy, knowing that their loss will never be able to be explained, nor their lives ever the same.
abbie and i went out to visit him today, and left a little 'z' present we made. we also left a little soccer ball for wyatt, who is buried right next to him. it was difficult to be there, but we needed to go. it still is very difficult to wrap my head around the way God has chosen to work in their lives, and it still brings deep sadness every time i remember what they have lost.
please continue to be praying for everyone, as these next two weeks will be extremely hard in so many different ways.
we will keep waiting to see how God is going to use this tragedy to bring people into closer relationship with Him, as we know He already has.
we miss and love you, sweet Ezekiel John.

leah has a great blog about her journey: http://mayhemakepeaceuponus.blogspot.com/

congratulations rachel & derek!

2010-08-08T23:03:00.001-07:00

this weekend, one of james' little sisters got married, and we were able to share in all of the fun! she was one of 4 flower girls at our wedding 11 years ago, and now our kids got to be in hers!
this was the first time abbie and asher have been in a wedding, and though it was a lot of hard work, we had a fun time. this was the first wedding where i was doing the photography AND had my kids in the ceremony. it proved to be very challenging with 5 little ones walking down the aisle together, but everyone knows that the cute things they do down the aisle is more fun to see than the perfect walking flowergirl... right?!!
i knew that asher would probably walk right towards me, so we practiced many times the night before. he did great, and walked right up to the front with no hesitation. but on the wedding day, we were able to sneak in a nap before the 2:30 ceremony, so when he woke up he instantly wanted to be with me. i was unavailable before their big moment, so when we started walking down (with a mouth full of smarties!) he was slow, but then he spotted me and came straight towards me. i tried to get him to keep walking down with the rest of the flower girls, but he just wanted to stay with me. it was cute, and the girls had their own cute moments too- tossing flowers high in the air, and dumping their whole baskets of flowers in one spot. it was a high energy day, but so much fun to share with them.
so, congratulations rachel & derek!
it was a beautiful celebration and we loved being there with you.

BIG CEDAR LODGE

2010-07-28T12:05:00.000-07:00

if you have never been to big cedar lodge you MUST go! it is right outside of branson and we had a great trip there this weekend! this was the sorell family vacation, and was the first (of many to come!) where almost all of us were able to go. we sure did miss our sorell's who are in korea, and of course baseball playing ryan, but to get 16 of us together for a weekend was truly a success.

and boy did we have fun!
as we were making the 3.5 hour drive down there friday afternoon, i was already thinking the trip wasn't going to be long enough. but let me tell you, after packing in over 10 activities into two days, it was plenty!

we each had an amazing cabin to stay in, so we had space to spread out and not have to be all over each other from morning to night. this allowed the little kids to take naps when needed, and to share some large family meals together. colette really planned it all, and it was fun from the moment we got there.

friday night we cooked out and got to bed late. saturday morning we were up early, having a quick breakfast and heading out to the pontoon boat. everyone was able to be on the boat together, including james! we did some fun tubing off the back of the boat and got a lot of sun. some of the small kids went in for naps, while the rest of us swam in the lake and perfected our tubing skills. 'granny c', as colette calls herself, showed no granny signs at all, getting on the tube by herself, showing off and eventually being kindly thrown off! abbie and her cousing mia had a great time on the lake, and really wanted to tube by themselves. so uncle matt started with them and then slipped off. there is one photo of them giving each other a high five on the tube, since they were on it with no adult! there were some fun memeories made!

we went to dinner that night and then attempted to take a large family photo... in the 90+ heat. we did get a few good shots, and i'm thankful for everyone sticking it out in the heat to get the image.
later that night, james and i took our kids to the pool, where they were showing 'alvin and the chipmunks'. we floated around and watched the movie and then were exhausted and ready for bed.

on sunday we had breakfast together, went to a different pool with all the kids, and then sent abbie and mia off to kids camp for stable day. they did a variety of horse activities from 12-3 and had a great time. i got to go jet-skiing while they were there, which was another fun time. i got thrown off by daredevil matt, but it was a blast.
later that afternoon we had sno-cones at frosty's and then went to the fishing pond. abbie caught her hook in some bushes, so we gave that rod to asher and he was so happy just throwing the line in and reeling it back. i think he really thought he was fishing! it was so hot, which made it really hard to stick it out for too long, but we did get close to getting a fish... maybe next time.

we had a great italian dinner at our cabin that night with everyone and then put all the kiddos in bed. the ladies all tried to go to the pool for some late night relaxing, but because of lightening, we weren't able to do that for long. even the indoor pool was closed! it was a funny adventure to share with all the girls!

monday morning we had breakfast together at fiords cabin and after packing up went to the main lodge for an arts and crafts time. we did so much in such a short time, but really got to have a lot of fun and make a lot of memories. thank you so much, brian and colette for a great trip! enjoy a few photos from the adventures!

friday....goooooiiingggg hhoooooooome!

2010-07-16T08:59:00.001-07:00

they have told us that we CAN go home today... as of right now (11am!). we are staying until his radiation oncologist comes to talk with him and take him to his radiation treatment, which is supposed to happen after lunch. who knows if that is 12:30 after lunch or 4:00 after lunch! we just have to go with the flow.
today will be the first of 10 treatments to his sacrum area, which should help relieve some of the pressure he is feeling. he does have a fracture to both his sacrum and his pelvis, which will have to just heal by itself. that will continue to be painful, but over time we hope that it will heal more.

while at the hospital, they did not find anything irregular with his heart after doing two different tests and having him on a monitor all night. though it did stop for 2.8 seconds yesterday afternoon, it has been fine since.

we've met with all the doctors and all have given the approval to go home today. yeah!
thank you for praying and sticking with us!

a quick update

2010-07-13T15:12:00.000-07:00

tuesday i sat down to do a long blog entry, updating everyone on the details of what has been going on with james. just as i did that we got a message from his radiation dr. that we should go to the hospital because they found a blood clot in his vein.
we had suspected this for almost 5 weeks now, but multiple leg sonograms had not shown anything. the ct scan that he had done to prep for radiation (that will be starting on friday!!!) showed the clot... finally!
james' leg has been really swollen and is just so huge it is unbelievable.
to finally find the clot is a great thing.
so after spending the evening tuesday and all day wednesday in the hospital at menorah, trying to figure out what to do, they have a plan.
today (thursday) they are putting in a stint in to open up the compressed vein. they will also put in a filter, which once inserted opens up to catch any pieces of blood clot that could break off. if something did break off and go into his lungs it could quite possibly kill him. the dr. this morning thought the size and location of his clot had an unlikely chance of doing this, but the filter is a precaution. yes, we are happy to take that precaution doctor!

so, we are in the hospital all day again today, and the procedure is happening now. it is a fairly simple thing to do, so there isn't a lot of risk. but he will have a hard time standing up and bending for awhile, because of where they go into the veins.

please pray for a quick decrease in the swelling of his left leg, for continued relief from the pain pump (that is a whole different story i will tell) and for the clot to be broken up, removed and not a problem anymore.

thanks again for journeying with us!
love, james and sarah

quick surgery update

2010-06-24T12:48:00.000-07:00

this morning james had the surgery to implant the pain device and everything has gone well. he was in at 7:30am, the procedure was over by 9am and i saw him after recovery at 11am. he was so groggy still from being put under, and had a beautiful head of messy bed head. it is funny.

the pain pump has been running and he hasn't mentioned any feelings of intense pain at all. he is sore from where they did the implant, but of course that is expected. it is 3:00 now and he got up for a bit and is now back resting. he asked for an additional pain med, to maybe help with the soreness, but again was the first time he's said he wanted anything.

so it looks like the medication mixture they have running in his pain pump is working well. he has a big wrap around his belly, to keep things from moving around, to avoid any type of infection. as he drifts back to sleep i am going to run home and get some things to stay overnight with him.

thank you for praying today and we will be sure to let you know how things are progressing!
praise God for allowing him to have this surgery, and for it showing positive results so far. we continue to live with an attitude of hope... for today and for the future.

surgery on thursday

2010-06-22T19:26:00.000-07:00

thank you again, to all who have looked at the care calendar link for us. we so appreciate it!

on thursday, james is having a surgery that we are very hopeful will make a huge difference. he will have a small device implanted in his side, called an intrathecal drug pump.

here is what a site online has to say about it:

intrathecal drug delivery, or 'pain pump' is a method of giving medication directly to your spinal cord. the system uses a small pump that is surgically placed under the skin of your abdomen and delivers medication through a catheter to the area around your spinal cord - similar to an epidural that women may have during childbirth. a pain pump may be a treatment option if all other traditional methods have failed to relieve your long-term symptoms. because the medication is delivered directly to the spinal cord, your symptoms can be controlled with a much smaller dose than is needed with oral medication. the goal of a drug pump is to better control your symptoms and to reduce oral medications; thus reducing their assoicated side effects.

so, if it works like it should, it could really make life much better. we are praying that it works and that this would be the beginning of a new phase of 'good' life for james.

the surgery is scheduled for 7am, so we have to get there at 6am. wednesday night the kids will get to stay with gigi and papo, which everyone loves! we shouldn't be there too long, though they will take some time to get the pain medication level correct once the device is implanted.

thank you for praying and for continuing on the journey with us!

the blessing of help

2010-06-22T16:38:00.000-07:00

we have been so blessed by family and friends helping us out so much. it is hard for us to ask and accept so much from others, but when it comes down to it, really makes life easier when we do. and with james in such pain, it has been hard to get anything done outside of the normal 'get through this day with the kids' stuff!
so for those of you who are helping, thank you.
to those who have in the past, thank you.
for those who are organizing the recent help, thank you.
for those who are going to help, thank you.

a new care calendar was set up by our friend, for meals and random help, so i thought the easiest way to share it would be to post it here.

here is the link:
http://www.carecalendar.org/logon/43321
the security code is: 4200

thank you to everyone who helps us keep going, through prayer, encouragement and hands on service. we love you!

for father's day

2010-06-20T23:48:00.001-07:00

today we took some time to celebrate james! he is a great father, and it is so fun to watch both abbie and asher express their love to him. i wanted to take some new photos of the three of them all together, to mark this time in life, so we went to the backyard after dinner and had a quick shoot. we got a lot of great moments and i am happy to have these photos. we love you so much!

what a few days we've had...

2010-06-08T14:51:00.000-07:00

just like outside today in kansas, it is pouring... as it is in our lives again.
but the clouds do clear and sunshine does show itself to us- eventually.

i spent the last two days at olathe medical center with james, dealing with some very intense nerve pain to his left leg. see, i was out of town for a wedding over the weekend and my sweet husband tried to do some wonderful things around the house. he knows he has hundreds of people who are wanting to help him do these things, but the man in him just wanted to do it himself. and when he does that, his sciatic nerve just gets mad at him.

recently he's been told that the tumors on his spine are also getting bigger so the combo of that with too much extension in lifting and bending all worked together to set him into some big pain.

we went to the ER on sunday night, after i got home, and they gave him 2 shots of pain medicine. these don't work, because they don't effect the nerves. we could have been admitted to the hospital and spent the night, and then seen an anesthesiologist to see if he could do anything. we opted to go home, so he could sleep in his own bed, and come back in the morning if necessary.

it was necessary, and we checked back into the ER on monday. we hoped they would just get us admitted quickly and go from there, but they had to do all the protocol checks and questions and after several hours, we did get a bed in the hospital. james was quite loopy, and on so much medication. it was wonderful to have my mom with me while we waited and kept a close eye on james.

the dr. saw him and wanted to put him on more pain medication, but i was pretty insistant that it needed to be more particular for his nerves. with a recent MRI in hand, he was able to call the pain specialist and anesthesiologist to come back to the hospital to perform a treatment.

he did a nerve block to his S1 vertebrae, which has really helped. he injected a pain medication as well as a steriod right into the base of the nerves, very similiar to an epideryl. it has really surpressed the pain and should give him general relief for quite awhile.

we are home now, and thanks to wonderful friends and family our kids were well taken care of. once again, it is such a blessing to be able to just call and hear 'whatever you need, i will do'. thank you to everyone!

we hope that this week remains calm and that we can get back into a slower, summer like type of life while still dealing with all the trouble and sadness that we have experienced in the last month.

thanks for your continued prayers for our entire family.

now, let the sunshine burst through!

mourning for my sister - posted by sarah

2010-05-28T13:12:00.000-07:00

sometimes in life, we question why God does what He does. but we believe His Word to be true, and work hard to have the faith that He wants us to have.
this is going to be the daily challenge that me, my family, and my sweet little sister and her family are going to be facing.

on friday may 21st, my sweet nephew, wyatt, went to be with Jesus. this is only 9 months after his baby brother, zeke, went to be with Jesus. both were taken in an instant, by accidents that were completely unexpected.

why, Lord? why would you take both sons from my sister, Leah?

as you can imagine, her life has been turned upside down. not once, but twice. her little girl, Cassidy, and her husband, Tom are all facing new grief as they mourn losing Wyatt. and we all are trying to figure out how life is supposed to look now.

our daily sadness, mixed with constant questions, is exhausting. the memories and thoughts of him bring tears, but are so important in remembering the buddy we loved so much.

it is a reminder that life is not in our hands, that in an instant, we are faced with eternity. we are confident that Wyatt is in Heaven, being loved by our Father God. we believe, as parents, that our children are given to us by Him, and belong to Him. but never do we plan to have to give them back to Him... and in such an instant, at only 4 years old.

there are so many people who have been shaken by this. we hope that hearts will be turned towards Christ, who is our only salvation. he gave His life, so that we could know Him personally, and so that He could be our peace. we will need much peace as we struggle through this.

we do have hope to go on, knowing that it will be hard every day, but trusting that He will sustain us.

Wyatt is so loved by his cousins, his grandparents, his aunts and uncles, his friends and so many of us will find it so hard to enjoy life without him with us. but we will show our love for him, by remembering him and his joy for life, taking this moment to speak truth about the Savior, Jesus Christ, and the importance of being His child.

though i do not understand why God has chosen to work this way, and just say 'really, God?!' a lot, i will try to seek His face more, love others more, and pray to learn how to comfort and encourage Leah during this valley in life she is facing.

we miss you so much, sweet boy.
all our love to you, Wyatt.

a lovely rainy day

2010-04-23T00:18:00.000-07:00

thursday was cool and rainy, but it was a nice change. asher could not understand that he couldn't go out and play, and that made him so mad. but wonderful daddy got the umbrellas out and took a walk with the kids. i took a [much needed] work break, to go enjoy the rain a bit with them. thanks, james for being the best daddy to our kids. rain or shine, we all love you so much.

a QUICK update on life

2010-04-12T06:17:00.000-07:00

so much has been going on around here, but i've neglected the blog... so sorry!
here is a quick update:

1. we are LOVING the sunshine! it has been so great to be outside. we have a great neighborhood of friends, so there are always big wheels and scooters out for fun!

2. james IS doing treatment at KU Med. they approved him to continue with the Erbitux infusion, so he is going on thursdays. this week will be his 3rd treatment.

3. abbbie had her birthday! she turned 6 years old. we had a week of celebration (the way us franz girls have always done it!) with an overnight to the great wolf lodge (thanks marjorie!), party at school, dinner out with gigi and papo and a fun bday 'GAME' party!

4. asher is loving the outside. he 'drives' a big wheel all over, complete with 'rrrrrrrrrrrrrr' sound effects. he is all boy! he loves hitting the baseball off the tee, and still loves going really high in his swing. it's hard to believe he'll be two next month! we have GOT to get rid of that pacifier soooooon.

5. the spring has brought many new clients in for business, and a lot of new beautiful babies have been born, which is keeping me busy! i just wish i could set up my desk in the back yard, rather than be in the basement. maybe one day i will.

one...two...

2010-03-27T12:54:00.001-07:00

abbie ties a shoe! she had a big week, with a trip to dentist [she had a tooth pulled, photo and story coming soon] and now she learned to tie a shoe. she is so determined, she just sat down and we practiced over and over. she loves accomplishing things, and is pretty proud of herself. check out the short video of her making the 'perfect knot!'

Abbie's third day of skiing

2010-03-18T21:13:00.000-07:00

Sarah, along with other family members, departed for the Mary Jane slopes early today. I brought Abbie up after lunch to meet Sarah and crew for another day of skiing-and why not? Kids under 5 ski free, including rentals, yahoo!! Abbie learned some basics on Monday at ski school and really improved on Tuesday-her first full day of skiing with the help of Rod and Rachel. Today, Abbie mastered the mountain, skiing down an entire run without falling!! She was all smiles as she finished (in the photos below). She said she was singing while she skied which helped her stay relaxed and focused as she maneuvered the slopes. We are both thrilled that she attempted this endeavor with great effort and perseverance! However, she required more patience as she did not want to wait for her mother... snowboarders are always slower to get started! After Sarah and Abbie exited the ski lift, Sarah had to strap her boot into her snowboard, but Abbie didn't want to wait, saying,"lets go, I have got to go." At least she was having fun!

perfect timing... and colorado!

2010-03-16T22:02:00.000-07:00

we've shared a bit about the success of the treatment at MD, so be sure to read the post below. sorry it took awhile, but james wanted to make sure i clearly explained everything. :) one amazing thing that God did for us while we were in houston was to allow me the chance to spend time with my friend Jena. her house has been for sale the entire time we stayed with her, because her husband has been working in denver.... sort of a long story...
the awesome God thing, was that the last week we were in houston the house sold!!!
they had been trying to sell for quite awhile, but God knew that it would be such a blessing for us to be able to stay with her, so not until this cycle was completed did He allow an offer to be made on the house. isn't that just perfect timing!! so, now after several months apart, she gets to move back to denver and be with her husband again. i love the perfect plan of our great God.

and speaking of colorado, we are enjoying a great time in colorado on our family spring break trip. abbie went to ski school yesterday and we took her up on the mountain with us all day today. she did amazing!! it was a beautiful, 41 degree sunny day and we all had a blast! my sister, rachel along with my dad, worked with abbie to perfect her 'pizza slice' snow plow and turns. my other sister leah and i snowboarded- her first time back on the board in 10 years! she did great, and everything came right back to her! my uncle jack (73 years young!) and james skiied with us too! james got some great video of abbie- here is one to show you her great skiing technique. we'll put more on as we get more video of our adventures!

what we've all been waiting for...

2010-03-10T07:00:00.000-08:00

this week, on our trip to MD Anderson, james was scheduled to have 2 scans done, to see how the cancer has responded to the clinical trial. he opted out of doing the MRI, because laying on the hard table for 3 hours would just worsen the back pain he's been feeling for the last 2 weeks. he did do the PET scan, which would give the doctors plenty of information on how he is responding.

and the good news is...
THE CANCEROUS ACTIVITY IS RESPONDING TO THIS TREATMENT! AND FOR NOW, IT IS UNDER CONTROL.

we never expected that this treatment would completely get rid of the cancer, but to see that it has had a positive response in his body is wonderful.

in the report they gave to us, there are 4 or 5 different areas of disease that have seen an actual decrease in cancerous activity! they measure the level of cancerous activity with the term SUV- here is a little more info on that:
{Measuring the SUV (Standardized Uptake Value) is a semi-quantitative way to assess the activity in a given focus. It represents the amount of activity in the focus relative to the activity in the other (normal) areas of the body. Typically, the SUV value of metastatic lesion is above 2.5.}

in james' report, here are some of the results, which i think is helpful to see just the number decreases:
*the previously noted focal area of moderately increased activity in the left sacrum is shown again with decreased SUV from 6.4 to 5.7.
*the lesion in the right iliac tuberosity (hip bone) also shows decreased SUV from 5.7 to 4.4.
*there is no new focal area of abnormal increased activity in the bones.

this is fantastic news!
all of the travel and treatment and uncomfortable side effects have been worth it! this treatment is causing the cancerous activity to decrease, which is what we hoped for.

his disease will never be cured, so we are always just working on controlling it. and this is showing to do just that.

now, they would love for him to continue on the trial in houston, because he is a success story. that would make the dr. and research team very happy! but, we are going to try to see if his dr. at KU Med would be able to administer the treatment to him at home, so he wouldn't have to continue to travel each week. there is a lot to figure out, with insurance and his doctor's decision on whether or not he feels comfortable doing this. you see, the combination of drugs he is on is not fda approved. both drugs individually are, but the combination is something that they are testing. so we will have to see if his dr. would be comfortable doing both drugs together, to allow him to continue on the treatment at home. again, we will have to see if insurance would cover it, if it is no longer a MD Anderson supported trial. it will take awhile to get this figured out, but we think we know how to go about it.... think, being the key word. we all know insurance isn't the easiest thing to work with!

so, for now, we are rejoicing in the success that this shows.
we thank you for praying for us and for believing the best with us.
we continue to ask for your prayers as we go into this next step of deciding what to do.
of course, we will keep you updated with anything new we figure out.
thanks again, for being a HUGE part of this journey with us!!!

it's the final countdown...

2010-03-04T05:27:00.000-08:00

this week's trip was a good one, with beautiful sunshine in houston! if only we could spend more of the time outside...

before we left for the trip this week, james was complaining about his back/tailbone hurting. he had played with asher outside, riding around on a little car with him, and just this little bit of activity sparks up the nerves in his lower back area. it was very noticeable on the plane ride, but luckily it was a light flight, so he had room to lean over and spread out a bit.

he was scheduled to have an MRI this week, and was really dreading it because the table is so hard to lay on. when i reminded him that we moved it to next week he breathed a huge sigh of relief! so this week we only had to do the treatment. it was hard for him to lay down on the bed, so he spent most of the time standing up... he actually fell asleep standing up! one minute i see him standing up 'reading' his narnia book- the next he is falling foward onto the bed! thankfully he was standing right by the bed, or he could have really hurt himself!

this week we ventured out into the university area of houston and had a great lunch and an even better dessert. there is an outdoor shopping place with all the 'normal' shops but across the street is a strip of unique shops. it is a photographers dream of a place to do photos. the purple tiled floors, orange chairs outside and great places to stop for eating a treat would make for a great session!

we first stopped in the candy shop, which smelled so good. we bought some things for the kids and then headed next door to the chocolate bar. yes, a whole shop of chocolate. there was ice cream, cakes, fudge, chocolate covered everything! neither of us are huge chocolate people, but it was a really cool place.

our final stop was the one we planned on- swirlls. it is a serve yourself frozen yogurt place, with a salad-bar-like spread of toppings to choose from. james LOVES yogurt and when you add pomegrante as a flavor and fresh fruit to put on top, he is in heaven. it was a nice treat to give ourselves and i think we will probably go back next week, for one last time!

our plan for next week is to leave at the crack of dawn monday morning. we'll get our rental car and go straight to the hospital for his 10:30 PET scan. this takes about 3 hours. after this he will do his MRI. on tuesday we will meet with the doctor and look at these two scans and see what the results of doing the treatment have been. then he'll do his final chemo infusion. both days will be long ones, but the fact that it is the last time, it will be fine.

of course our hopes is that the scans will show no new growth in the size of his (many) tumors, and even a shrinkage of some of them. that would be wonderful and make him feel like everything has been worth it. even if things are just stable, the same size as when he went in, that would be a good thing too. if either of these are the result we will pray about whether or not to continue on it back here at home. we could come up with our own plan, about how many times a week/month he wanted to do it, so he could tolerate the side effect of the rash a little easier. all of that will come in time, but we'll keep you posted!

thanks again, to everyone who helped us out this week. the food was great and the sparkling clean house is beautiful! i'm sorry to my friends who were kept away from helping, due to our two sick kiddos. both are doing better, but still on medicine. abbie hasn't gone to school and probably won't the rest of the week. we want everyone to be feeling in tip top shape for our family trip to colorado for spring break!

and just because people like to see funny photos of our kiddos, here is one of asher. for some reason he loves to put things around his neck and on his arms... so even though it is mostly my jewelry, we still think it is hilarious.

in the home stretch...

2010-02-19T18:29:00.000-08:00

james is in the final weeks of treatment, and things are going alright. after having some weeks off he was feeling much better and the rash was calming down. now, with 2 weeks of treatment in him, it is all returning. it doesn't seem as bad yet, so we'll keep hope that the lower dose will keep it that way.

we don't have to meet with our dr. anymore, before the treatments, which makes for a really quick appointment! this week we were in at 9am and done at 12:45. it would have been earlier than that, but the lab for blood work had some problem. it was nice to be done early for once! we had lunch and then went to see avatar... he has been waiting so long to see it. we really enjoyed it!

next week he is going to travel by himself, and make it a quick 2 day trip. he'll be home late tuesday night, and i'll be able to be home with the kids for the whole week. abbie will love this, as she has been really desperate for time with me. it will be nice to give it to her all week!

after next week there is another treatment with an MRI. then the following week he has a PET scan and the final treatment. we'll see what they say after the scans, to see if there are any changes in the size of the tumors they are targeting.

thank you to everyone who has given their time and treasure to help us through these months. everything has gone really well, in all aspects, and we thank God for providing that for us.

have a great weekend!

DISNEY WORLD!!

2010-02-16T09:19:00.000-08:00

the wait is over... the family slideshow from our disney trip is here! i'm sure you're not as excited about it as i am- just to have it done feels great. we had such an amazing time, and looking back at all the photos was a reminder of how incredibly blessed we are.

the group of prayer warriors who put this trip together for us are still a mystery to us. our dear friend, marjorie, shared the idea with them when they asked if there was anything big they could do for us. to have a gift like this given to us was incredible and we have so many great family memories from this experience. thank you, thank you to everyone who helped make this possible for us.

enjoy the show... it is a little long, so sit back and relax

www.sorellimages.com/disney09/

happy valentine's day!

2010-02-13T20:55:00.000-08:00

we've had a good week!
james' rash has calmed down a lot! this is partially to having one week off, but then this last week they lowered the dose on both meds. this will still prove itself in the end, but we believe it will work and at the same time allow james to not be so incredibly uncomfortable.

i was able to reconnect with many of my favorite clients and their awesome kiddos! i packed 9 sessions into 3 days, and will work hard to stay caught up with everything!

my dad, uncle and niece all celebrated their birthdays this month, so it was nice to be able to get together to have dinner and have a little party for them. finding the balance of work and 'play' is a challenge, but i think we're doing okay.

enjoy the love of valentine's day and make it an important day for all those you love!

a quick trip to the ER

2010-02-07T22:43:00.000-08:00

tonight, during our superbowl party, james and i made a quick trip to the emergency room. his rash has been hurting him more, especially on his legs. it looks quite a bit more infected in areas, and we wanted to make sure there was nothing serious going on. because the rash is uncomfortable, having it on his knees makes it difficult to walk, sit and get up from sitting... and he's been having some shooting pains in his knee when he does get up.
so, right before half time we went to the er.

we were having our annual community group superbowl party (our 3 year anniversary party too!) at micah and jeremy's house, so we were able to leave the kids with all our friends. because we see each other a lot, abbie and asher are very comfortable with them, and love any time together. that made it easy for everyone!

so, after a quick x-ray of his knees, and blood work done, they didn't see anything unusual. they gave him a shot of a steriod that should help with the rash and swelling and switched him to a higher level of antiobotics. hopefully all of this will make a difference, and quickly, as it will be a pretty painful plane ride tomorrow with all that sitting. once again, we've been blessed with tickets for the flights, which is a huge blessing! i hope the snow doesn't deter us from leaving.

he'll start the second (and final) treatment on tuesday, after we see doctor wheeler.

they are going to lower his dosage, hoping to still get the positive effect they want with a little less of the negative side effects. we'll see... and we'll keep you posted...

whistle while you wait...

2010-02-03T22:44:00.000-08:00

neither of us can whistle, but some days i sure wish i could. we waited to see dr. wheeler this week, and though it wasn't as long a wait as some weeks have been, it still was a little while. i try to 'jinx' us, by waiting a bit to get the laptop out to work, knowing that as soon as i get everything plugged in and loaded they will call us back. it didn't work as quickly this time (so i did get a few more disney photos ready for the upcoming slideshow!) but it wasn't 4 hours of waiting. hallelujah!

we first met with a dr. that james had seen on his first visit. i guess he is the one with the really good information, because he explained a lot to us in very simple terms. as he looked over the rash he commented 'it must be working'. i asked him if they say that just to make the patient feel better, or if there is truth in the statement. he explained that there definitely is a connection between the treatment working and the evidence of the rash. the chemo treatments are targeting cells, and killing them. of course they are targeting tumor cells, but if the chemo is killing skin cells, causing the extreme rash, it is most likely killing the tumor cells as well... that should have an exclamation point... it is most likely killing tumor cells!!!!

so, though it is horrible to endure, the rash is a good thing. it is spreading all over his legs and arms and is bigger and more red in these new parts. the simplest of things, like his t-shirt rubbing his chest, or the edge of his socks rubbing his legs, are all becoming painful. we talked about wrapping some of the big parts up, with some ace bandages, and the word 'leprosy' came up...those people probably wrapped themselves up to make the itching less bothersome... we haven't tried it yet, but just might.

so after this dr. gave us the explanation they took more photos of the rash. it was suggested that he not get the treatment for one week, to let the severity of the rash die down a little. the other dr. and coordinator all agreed.

so james did not get his scheduled treatment this week.

he is very relieved in thinking how this week might be better, without new drugs making the rash increase. he will only have to endure what is there now, not adding anything new... we hope. it seems crazy, and a little waste of time and money, to go all the way there just to be told they would skip the treatment. but, we needed the dr. to see him to be able to allow him to take the break.

this means that his cycle #2 starts next week. four more weeks of treatment and then one more week for a series of pet scans and mri's. that puts us into the second week of march, one week before the family ski trip we are looking foward to. 5 more weeks... i am tired just thinking of it.

so, i will get back on the care calendar and add some new things for the weeks in march we'll be gone. it has been amazing to have so much help, even though the kids were sick and many of you didn't have to come over for your time. i so appreciate your willingness and flexibility.

we will continue to fly southwest, because the flight and the seats are very comfortable. we have only one more week lined up for tickets, but many people have chipped in to provide for us to be able to purchase more tickets. i can't say enough what a huge blessing our community of friends and family have been.

let's all continue to pray that the treatments will work, and that God would grant James endurance with the rash, hope for some daily relief, and peace that he is in the best Hands possible.

we love you guys!
enjoy a fun family photo from florida... thanks marjorie for capturing this one for us!

treatment #4... done!

2010-01-27T09:18:00.000-08:00

so we've reached week number four. it has gone pretty fast, and yet it seems like a long road ahead of us. yesterday we had a pretty smooth day with appointments staying on schedule. that is pretty amazing considering we've never experienced that before!! we didn't have to meet with the 'official' doctor, so that allowed us to stay on schedule.

the routine we've figured out works like this:
leave the house around 8am to get to the hospital. in rush hour this takes about 45 minutes, but yesterday we figured out the HOV (high occupancy vehicle) lane, and on the way home made the rush hour trip in 16 minutes!! if you have 2 or more people in your car you can drive in this single lane, that skips a lot of the exits and has no stop and go traffic. as i was driving it last night i kind of felt like i was breaking a rule, driving somewhere i wasn't supposed to be... i kept asking james, 'why do i feel nervous driving over here?' it was a strange feeling, but a wonderful feeling driving by all the red brake lights to our right!

so we get to the hospital around 9am. i drop him off right in front, and then go to the satellite parking lot. we can save over $10 by parking a little farther away and a good walk in the morning, in the warm sunshine is a perfect way for me to start the day!

james goes in to give blood, with freddy his personal 'blood doctor'. because he's in the clinical trial they have to be sure to do everything exactly the same each week and freddy does that! while he gives blood, i grab breakfast in the cafeteria and take it to up to the 10th floor waiting room for seeing the doctor. we've discovered the chick-fil-a breakfast biscuit and boy is it good! sometimes we eat while we wait (and wait and wait), other times we get right in, so we hold off.

we meet with chetna, who is in charge of the details of the trial. she is a fantastic woman, and we are so happy to get to see her each week and talk about the changes james has experienced in the last week. she charts what he talks about, and has been taking pictures of how the rash is changing. she is very encouraging and very eager to help us and be in good communication with us. that is a very rare thing at such a huge hospital, so we are very thankful for her. in that same meeting we meet with either the dr. or the physician's assistant. she looks him over, checks his blood work, and prescribe him anything new that could help in enduring the rash. this week he got a steroid cream. we'll see if it helps.

this week his blood work showed his white blood cell count as better than last. that is very unusual, as people on chemo usually get a really low white count. they did, however, see that his magnesium level was really low. so, they added an electrolytes treatment of magnesium to his treatment later in the day. james had told them that he felt unusually thirsty, cold and had leg cramps. all of this is because of his low mag. level, so hopefully those things will be better this week with that added treatment.

after seeing the dr. we head down to the 3rd floor treatment center. we wait for a room to open and then get settled in for the 2 hour treatment. i go with him, and we watch tv, i do work on the laptop and he usually drifts in and out of sleep. they dose him up with benedryl first, to help with the reactions, and this knocks him out! this week his treatment was during the lunch hour, so room service comes and brings you lunch.

because they added the magnesium to the treatment this week, we were there longer than normal... 5 hours. we started at noon and left at 5. it wasn't bad, though the thin mattressed bed does get uncomfortable for him. next week we're scheduled to back in the better center, where there are larger and more comfy beds.

heading home, we cruised in the HOV lane and saved a bunch of time! we ordered pizza with jena, our angel in houston. we love getting home and having time to unwind and talk with her. it really is a peaceful home to be in while we are here. neither james nor i are dog lovers, but her two cuties are very easy to be around and to love. we have a nice night of pizza and american idol and just take it easy.... have you all seen the 'pants on the ground' song? it is hilarious!

today our flight leaves at 2:30, so we're able to have a slow morning not having to return to the hospital for anything else. southwest has been a really great airline to fly on and we are so thankful for the blessing of having that provided for us.

we will keep you posted on any changes that james experiences this week, but for now just continue to pray for continued endurance of the rash and that the new meds might help make it less annoying.

have a great wednesday!! we love you!!

promised some photos

2010-01-25T11:20:00.001-08:00

i promised some photos for you yesterday, so i thought i'd do a quick family photo update on everyone.
i am sure james will not love having these out in the blog world, but i think seeing them will give you a better understanding of the words i'm saying about the treatment side effects.
as for abbie, she is a star! i love it that she likes having fun in front of the camera... and those big brown eyes are just something, aren't they?
but the blue eyes of asher are right up there too! his open mouth happiness is really who he is. i just wish you could hear the squeels of happiness that usually go with that look.
and for me, these photos were taken by abbie (yes, abbie) when she accompanied me to a session at the [un]studio last week. she really can balance my camera and actually frame the image right to get a good shot. though the challenge we face now is no fun, we really are blessed with the great family we have!

[if you click on the photo you can see the image larger]

week #3 recap... getting ready to go for week #4

2010-01-24T17:03:00.001-08:00

we've been home for a few days, but now it is already time to leave again. abbie knows that sundays mark the beginning of us being gone, which is a little sad for her and for us, but we'll do what we need to do. overall both kids are doing well, adjusting fine to us being here then gone. asher doesn't really notice that we are not here... except when it is time for him to get up and it isn't 'momma' who gets him out of bed. he is pretty happy all of the time, especially when we walk in the door on wednesday nights! it is fun to come home to their hugs and kisses.

last week at MD Anderson was a test in waiting. because the clinics were closed monday for MLK day, everything was overbooked on tuesday. so we waited for the dr. for 3 hours (to spend 13 minutes with her!) and then went to wait for his treatment. after seeing how full the room was, and that no one was really being called, and that we were already 3 hours late for our appt. i requested that we have the chance to change his treatment to early wednesday morning. they had to call the dr. to get the approval, and she said we could. james just can't sit in uncomfortable chairs for that long, so being able to get out of there and return the next day was a good thing. i was frustrated too, because it was the only week that i didn't bring the laptop to do any work. it was a difficult day just waiting... but that is what the hospital is always about. hurry up and wait...

after making it home through crazy houston rush hour, we made it back to our wonderful place to stay. my sweet friend, jena, has been a blessing and we are enjoying our times together. tuesday nights are pizza night, now with some fun 'idol' to watch together. it is nice to unwind, and to enjoy sunny, warm days. last week it was 74! gotta love that for a change!

and now it is sunday night, and we are repacking our carry-on bag, which we've gotten really efficient at! since we are at jena's we've been leaving some things there, making it easier to get through security. james gets stopped every time, with his pile of meds and bottles of water. we've gotten through fine almost every time, so we haven't had it too rough. we flew on southwest last week and will do the same flight for the next several weeks. it is a pretty good flight.

we've been blessed again from people at our church, with plane tickets for this week and for next! and today we got 2 more envelopes of cash and gift cards to cover travel costs and daily living from our loving church friends. if you are not involved in a church, with a community of people surrounding you, i cannot express to you how invalueable it is. not just for the details being covered, but in knowing that every monetary gift and act of service is surrounded by prayer and encouragement for God's best for us. we are repeatedly in awe of how He has used the people around us, and feel amazed at the unity we are a part of. thank you to every single one of you who have prayed for us, given to us, served us, loved on us. we are making it through and know that the time spent doing this will reap benefits we will never know, first for james' health, but more importantly for the glory of His kingdom.

please be praying for the continued healing of james. the rash has gotten worse on his head, which is more tender than anywhere else. the acne like bumps are all over his chest and back and seem to be spreading more down his arms and some even showing up on his legs. it is on his face too. the creams and prescriptions they've given are helping a bit, but not enough. we will ask again this week if there is something else he can try, but for now he just has to endure. he isn't nauseous at all, and the lower back pain he has isn't too bad- it is just the irritating pain of the rash. he is able to sleep, which is great, but just needs relief from it during the day. we've been taking photos, and will post some soon, so you can see the progression of the side effects.

thank you again for journeying with us.
we will continue to press on....

week #2 update

2010-01-14T15:33:00.000-08:00

we had a successful trip this week, a long flight, but a short treatment. i guess there is always a trade off. last week it was a short, amazing plane ride and a really long treatment. this week it was the opposite! week 3 is looking like it will be great, with a direct and short flight, and a short treatment. that would be ideal.

when i talk about the treatments being shorter, it is because they are giving him a smaller amount of drug now. the first treatment he got the largest dose (400) and now he will get the same dose each time- 250. this means that the immediate side effects will be less, which is great. the long term side effect of the rash and acne like bumps have come on strong. this is very uncomfortable for james and has actually made it harder to sleep. we bought a lot of creams and ointments yesterday when we returned, to help with the redness and itching. he has also been given some prescriptions for the itching and redness which we hope will help over time. this will be the hardest part of the treatment to endure. being uncomfortable all the time is very tiring and doesn't seem like it is worth it. i have to keep reminding him that if 8 weeks of uncomfort will add years to his life, it is worth it. please continue to pray about this for him.

and for me, i have felt the call to be 'super mom through the super natural power of Christ.' this means using every minute i have in the best way possible. i know i need to be on the ball, spending time with the kids and taking care of james, keeping up with e-mails and our schedule, booking flights and accomplishing photography work. please pray for me, that this will be possible through the power of the Spirit.

now for the details:
i added a few things on the care calendar, for mondays. so many of you have already signed up to help and i can't believe how fast it happened. thank you so much.
i will have a detailed schedule for each person who is taking a 'shift'. if you have questions, please ask. i've tried to think of everything, but i know something is missing.

we'll be leaving again monday for treatment #3 and will let you know how specifically to pray.

blessings to you!

To access james sorell's personal CareCalendar site,
visit http://www.carecalendar.org/logon/29980
and enter the following information in the appropriate spaces:

CALENDAR ID : 29980
SECURITY CODE : 6380

thank you for serving us

2010-01-10T17:43:00.001-08:00

we've been so blessed by people wanting to help us, so i've put together a care calendar online. this shows many of the needs we'll have while we are both out of town monday-wednesday.

To access james sorell's personal CareCalendar site,
visit http://www.carecalendar.org/logon/29980
and enter the following information in the appropriate spaces:

CALENDAR ID : 29980
SECURITY CODE : 6380

we are planning to leave for week#2 treatment tomorrow morning, flying a much longer route than last time. please be praying for james, that his body will not be in too much pain while we make the long trip. we are thankful that we are able to get the tickets at a good rate, and will not have to miss one week of treatment. i know that the Lord will be his strength while we fly. thanks for your constant encouragement and love.

houston update

2010-01-08T23:45:00.000-08:00

a huge thank you for all the prayers and encouraging words you all have shared with us today! we are still in need, but feel blessed to have so many standing solid with us.

the corporate angel flight is not available for our trip next week, so we are scrambling to find a way there for treatment on the 12th. many options are on the table, including buying cheaper tickets off of craigs list, using stand-by tickets, talking with friends who know pilots and even thinking about making the 12 hr. drive...

please continue to pray that God will open the door, so james can make it down for the next treatment. if we aren't able to make it, it will be alright. we can just go the following week, but won't know if that will change the plan for the entire trial.

we look foward to seeing how God is going to work this all out- HE ALWAYS DOES!

chemotheraphy

2010-01-07T18:41:00.000-08:00

We just completed our first of many trips to MD Anderson, to begin a new clinical trial for my cancer. We flew in Monday morning, on a very nice jet. The trip was quick and very nice. Sarah and I were the only passengers, had no security lines to go through and enjoyed coffee and donuts during the trip. This is the best way to fly and such a blessing.

We spent all day Monday at the hospital, doing blood work and a PET scan. Everything takes so long, so being flexible and on no specific time schedule is the way to be. It was frustrating at times, but that is just the nature of the situation. We were going to get in for the PET scan 2 hours early, but because I had been chewing gum, I had to wait to begin the treatment! I didn't know that 'no eating or drinking' included gum. Now we know.

On Tuesday we met with the doctor and coordintator of the treatment. They were both very helpful and informative nice ladies. They told us that this trial is a 28 day cycle, and that I will be doing two cycles. During the cycles I will be doing a daily pill treatment at home and a weekly infusion at the hospital. I will be on two types of drugs Erlotinib (Tarceva) and Cetuximab (Erbitux). The Tarceva is the pill and the Erbitux is the infusion.

For the infusion, I was in a private room, getting the drug through an IV. Normally, this will be about a 3 hour process, but the first time it took 5 hours. Sarah was with me, working on the laptop and I was in and out of sleep while watching TV. Towards the end of the treatment I began having a mild reaction of shortness of breath and chills. They gave me oxygen to help with the difficulty breathing and after I was feeling well enough to leave it was 10:00pm.

It was nice to be able to stay with Sarah's friend, Jena, in their beautiful house. This made the trip more comfortable, since we had a great place to unwind and to sleep. Sarah was also able to meet up with one of her friends while I was having my scan, again thankful to have friends to be with during the stay.

So far, since I've been home, I have had headaches, am feeling tired and nauseous. These are all side effects of the Erbitux. I am keeping a log of everything, which I will report to Dr. Wheeler each week.

I am scheduled to go back for my infusions every Tuesday until the end of February. We do not know how we will get there each time, as the Corporate Angel Network is not always a guarentee for having a flight. As of now, there is no flight for next week, so we will either drive or pay for a very expensive pair of tickets. We know that God will always be providing for us, so we're not yet stressed about how it will all come together.

It will be interesting for Abbie and Asher to have us gone each week, but again, that will all work itself out. My parents are able to help with the kids, along with our dear friend Marjorie, and I know many of you will help us out with them too. We are already thankful for the many people that will help us get through these next 8 weeks.

Please pray for our family as we have a very challenging 2 months ahead of us. We are hopeful that these treatments will cause the tumors to stop growing, possibly even shrinking in size. It will be a long 8 weeks, with many changes and unknowns, but we know we will get through it. Pray for health for me, as I experience the effects of the treatment- the main one being the rash that is very likely to occur. Pray for Sarah as she will have a change in her work availability since she will be travelling with me most weeks. Pray for Abbie that she will understand why we are gone, and that it will not effect her emotionally. Pray for Asher that he will sleep well while being in so many different locations while we are gone. Pray that the flights will get worked out for the dates scheduled so far: 12th, 19th, 26th & Feb.2nd, that we will be able to contiune to travel with Corporate Angel Network for free.

We know that God is going to be our strength and provider through all of this, and we look forward to being able to give Him glory for all he has done! Thank you for your love and support.

a disney preview & a trip to MD...

2009-12-30T20:55:00.000-08:00

MD Anderson, that is. James and I will both be going on this trip- Jan. 4th and 5th. He is scheduled to start his new clinical trial this time, and we want to get as much information about it first. I am thankful that my sister, Rachel will be in town from Denver, to help my parents with Abbie and Asher while we're gone. They both LOVE Auntie Rachie!

This trip we've been blessed with being able to fly with Executive Air Share, an organization that allows cancer patients to ride in extra seats on corporate jets. We'll leave from the downtown airport and get to fly in a very comfortable (and beautiful) Phenom 100 jet! This is a HUGE answer to prayer, as there is no fee for doing this. And, you can do it as often as needed, if flights are available. So, many thanks to all of you who have been praying about this for us. The Lord continues to meet our needs in powerful ways. We will share all of the details with you once we return.

For everyone who is asking to see images from our Disney trip, you will! I am working on a show of everything, and can't wait to share it. For now, here is a little preview from our sunny day at Animal Kingdom. Abbie was a brave girl, and road the Expedition Everest roller coaster (not once but twice!) and below is her take on the experience. Notice her hiding behind daddy, and showing how her stomach felt going down the huge drop. It was a great time!May you have a blessed and happy beginning to the new year!

Merry Elf-Dancing Christmas

2009-12-23T19:22:00.000-08:00

Merry Christmas! We express our holiday cheer through dance. Open the link below and enjoy our performance.

clinical trial

2009-11-23T20:07:00.000-08:00

The words clinical trial may or may not be meaningful, but for a cancer patient it can mean hope-a last ditch effort to halt cancer's assault on the body. Cancer has been a vicious and cruel enemy to my body, destroying healthy cells and replacing them cancerous ones. This endless assault has created permanent damage and endless pain. My present struggle against this disease is a in the "do or die" phase of the game. I have had no promising treatment options during this long eight year struggle, but I remain hopeful this clinical trial will at least slow the cancer's progression.
I recently traveled to Houston, TX to visit MD Anderson cancer center. This world renown cancer center conducts clinical trials for all type of cancer. I will be participating in a phase one clinical trial using targeted therapies. They have viewed my medical records but more importantly they requested the pathology slides of my individual cancer cell. Under a microscope, they can view the distinct properties of the cell, helping them to formulate the treatment plan that is best for me. Many clinical trials use drug therapies which are not yet approved by the FDA and are very experimental. Fortunately, I will be using 2 FDA approved cancer treatments. The experimental part of my clinical trial is using the drugs in conjunction with one another in the treatment of cancer and the observation of side effects.
I will be using Tarceva and one other drug which is not yet known. I have been using Tarceva since June (about 6 months) and so far scans show that it may be helping the tumors in my lungs. Participating in this clinical trial will require me to travel to MD Anderson once a month for treatment and evaluation. This will be challenging both financially and physically. Flying to Houston has been expensive so far, and sitting on the plane inflames the cancer in my sacrum, causing high amounts of nerve and bone pain.

Star Wars Halloween

2009-11-06T09:16:00.001-08:00

My Star Wars fantasy began last year. Asher was 6 months old and the perfect size to be Yoda. If he was Yoda, I would be Darth Vader but couldn't convince Abbie to dress up as Princess Leia. She was set on being a farmer (and Asher was the cow). I had an entire year to introduce Abigail to the world of Star Wars . This year Abbie knew all of the characters from all of the movies (thank you Lego video games) and she decided to dress up as Ahsoka Tano, the female Jedi from the Clone Wars. This would be the year of our star wars Halloween!
I had one minor problem, Darth Vader costumes were not cheap, unless I wanted to sport a dorky spandex outfit. If I was going to dawn the mask of Vader, it had to look good. I didn't want to spend a fortune so I had to build my costume. I spent all of October crafting my costume to look authentic. I bought the helmet, gloves and light saber but I made everything else (Bev helped with the sewing.)
Not wanting to be left out, Sarah put together a Leia outfit from the Ice planet, Hoth. Ultimately, I wanted to create a lasting memory for my kids. If they don't remember, at least they have cool pictures!
.

growing

2009-08-20T20:31:00.000-07:00

Growth is good. Sarah and I experience obvious growth every day. We witness Abbie and Asher grow physically; We also witness their developing personalities, interests and talents. We grow in our relationships with people and God. Our bank accounts are (not) growing. As we live this life we grow in wisdom and intellect. Unfortunately, my cancer keeps right on growing too.

The cancer in my lungs is now twice as big as it was last year and as a result I have developed an asthmatic cough. The three areas in my head and neck are larger. I have noticed lately that I have had more difficulty speaking and eating and my doctor confirmed that I have lost some mobility of my tounge. This makes me really worried since I only have the use of half of my tounge .

I have been using a drug name Tarceva, a chemotherapy class drug which targets cancer cells, since May. This drug produces an acne type of rash and other skin issues. I tried this drug last year but discontinued using it after 6 months because of the rash. I have been receiving acupuncture twice a month and so far it seems to be keeping all of the side effects to a minimum. We will do some more CT scans in 3 months and we will know for sure if Tarceva is helping. If it is not I will probably pursue a clinical trial but I am hoping for the best. So as always, keep us in your prayers; pray that Tarceva would prevent the cancer from growing.

Another health note: On my recent scans, the doctors noticed that my left pelvic bone was fractured. The fracture probably occurred last August when I received radiation treatments to my hip and then was soon after unable to walk. This is the first time I learned about this but then again I have notice a painful bump for awhile. I didn't know what was wrong but I did know something wasn't normal. My advice... our body never lies, listen to it. If your body doesn't feel normal, be safe and check it out and stay on top of it!

abbie goes to school

2009-08-14T11:33:00.000-07:00

today is the first day of kindergarten! abbie is in mrs. maggard's afternoon class and just could not wait any longer to finally get to school! there weren't any tears, just loads of excitement and eagerness into this next phase of life. she is so ready, and we know she will do a great job. her desk is right in the front... which we'll see if that's a good or bad thing (for mrs. maggard!). i'm sure she will let everyone know all about her class and we'll try to get her words on the blog so you can hear about kindergarten from her view!

he's getting so big!

2009-08-02T20:03:00.001-07:00

i took asher to deanna rose on friday with my sister leah and her two kids. we had a great time, and asher really enjoyed making noises at all the animals. i had the chance to grab some shots of asher and have my new all time favorite image of him. enjoy!

asher wins

2009-07-16T08:14:00.001-07:00

the second part of the previous post, where asher does get abbies toys and tosses them off the bar stool, will not download! i have been working on taking movies with my new canon camera and the files are really large, and this movie won't upload. any suggestions on how to shrink the size of movies before uploading?

funny [clever] boy!

2009-07-14T20:33:00.000-07:00

asher is so funny. he is always making me [sarah] laugh, and i try to always make him laugh! he is changing so much, i thought i'd put out some videos. abbie has been learning that she needs to move her toys away from him, out of his reach, if she doesn't want him to have them [video1]. she tried, but as you'll see he didn't take long to figure out he could reach them.... listen for her 'growl' [video2 in next post] when she sees what he's done. so funny! **we have a chicago post down lower, so don't miss that!**

10

2009-07-11T13:07:00.000-07:00

We had a very delightful 10th anniversary! We spent 5 days in Chicago-the best "us" vacation since our Honeymoon. We stayed at the Drake Hotel down in the heart of the city and traveled all over the beautiful city. Our transportation included walking (a little too much for my pathetic body and by week's end I was experiencing pain), taxi, bus and the el-train. We dined in some very tasty restaurants. We enjoyed some deep dish at Gino's, warmed up with a spicy Blood Mary or Bloody Mike's as the call it at Ditka's. And we even spotted Mike Ditka as we were leaving. We dined in China Town, Navy Pier and filled ourselves to the full at many other places. I probably would have gained weight if it wasn't for all of the walking.

Some of the highlights from our trip included traveling by boat through the city on an architectural boat tour. This was a wonderful way to experience the city; We took the self guided Frank Lloyd Wright tour and his home and studio tour. His home was so innovative, impressive and ahead of its time. We spent an evening at the famous Navy Pier and an afternoon looking at sea creatures at the Shedd Aquarium; we were in the city during the The Taste of Chicago food festival-lots of food and even more people and some really cool street performances; of course the view from the John Hancock building was great but the most unique event we experienced was the strange and oddly satisfying Blue Man Group. This performance is definitely different but we recommend it!

Its been 10 years since Sarah and I first said "I Do," and every moment has been filled with bliss...mostly. We have had our ups and downs. Our "ups" have been crazy wonderful; our "downs" have have certainly terrible but it has all been better together. I can not image anyone else by my side-I all the more believe that The LORD definitely and divinely brought us together. He knew I would need an strong, thoughtful and supportive woman. She is peace in the midst of the storm and in this story I think I am the storm. Thank you for this lady. I look forward to celebrating our 20.

Manhattan or Bust

2009-07-09T08:56:00.000-07:00

Traveling with young children is challenging. Can I hear an amen? Amen! And traveling without Sarah is even more challenging. Sarah wanted some "alone time," this summer in order to accomplish things we hinder her from doing, or in other words James had to leave with the kids for 4 days. We traveled to Manhattan to visit family and a few friends. Abigail has always been a very good traveler but Asher proved not to be as he began whining soon after we hit the road (He doesn't like sitting still for very long). Abbie had fun feeding family's two dogs pieces of bread as they performed dog tricks. Abbie also loved sleeping over with cousin Leah. Asher had fun chewing on new and different objects. One particular night, after hanging out at my parents home, I returned to my grandma's home (the place we were sleeping) as thunder storm hit and knocked out the electricity at about 8pm and the power didn't return until around noon the following day...Asher didn't seem to mind.

Another late afternoon and early evening we spent time with the Vandorn family. This was the first really hot day and so it was a perfect day to take a dip in their community pool. We all had fun! Additionally, The Stewart and the Nutter families were enjoying the pool too-its was a pool reunion. And in grandma fashion, my Grandmother made our entire family a feast before leaving town so we were all fat and happy as we left town. Of Course we were all happy to return to see Sarah-But she was at a Bible study until 11pm and So Abbie cried "I want to see mommy" as I tucked her in for bed. Welcome home James.

treasure hunt

2009-06-22T10:20:00.001-07:00

Abbie and I created a treasure map while Sarah was away on a photo shoot. Our authentic treasure map, including burnt edges and candle wax from hundreds of years of use, provided detailed directions to our buried treasure in our backyard. When Sarah returned, she followed the map through the perils of our back yard and risking her own life until she arrived at the treasure. I had fun showing Abbie how to create the perfect Map and Abbie enjoyed finding the treasure!

our summer backyard campout

2009-06-19T14:47:00.000-07:00

On a cool evening in June, when the weather was just right, Abbie and I pitched a tent and set up a our camp site in the backyard. Our summer fun began with delicious food from the grill. As we ate our dinner (saving room for s'mores), Asher played in the baby pool. After Asher had splished his last splash, Sarah prepared him for bed while Abbie and I readied the fire. The sun was now setting as we roasted marshmallows over our fire pit in pursuit of the perfect s'more. Abbie sat toasting her marshmallow to perfection, with a huge smile accoss her face and said "This is my best day ever!" And it was a perfect day. Now our bellies were full and with bedtime upon us, Abbie and I headed to our tent for the night. We read books and watched a short movie which we had checked out earlier that day from the library. Yes, it's true, I had a laptop and we watched a movie in our tent... I never said we were roughing it. Our perfect day ended as we drifted off to sleep. In fact Abbie enjoyed it so much, we slept in the tent the following night. Great food, camp fire, s'mores, a borrowed tent, a borrowed air mattress, free entertainment and time with my daughter. It was one of my best days too!

Asher enters manhood

2009-05-26T09:15:00.000-07:00

That's one small step for Asher, one giant leap for us all. Okay, manhood maybe extreme but Asher finally took his first steps and may I add, on his own initiative! Until now, he has shown no interest in walking unassisted, but he took 2 small steps followed by a leap towards me. After his first baby steps, we made him do it over and over and he was enjoying ever step. At times he was exuding so much joy in his new accomplishment, he was taking several quick little steps...too quick for the rest of his body. Up next on his accomplishment list-soccer!

HAPPY BIRTHDAY TO MY BOYS!

2009-05-15T20:48:00.000-07:00

both of my boys had their birthdays last week, so we celebrated them together. this will be the first of many times they share a cake, the bday song, and asher will probably always get more presents than james. i think james felt a little jipped in the whole thing though. he grew up with a twin brother. jason was more outgoing, and as he remembers, ALWAYS blew out the candles on their shared cake. well, this year his shared cake was with his son- but abbie blew out the candles for them. he was waiting for the one year he'd be able to blow them out and in swooped those little lips of abbie's and poof! he missed his chance again. maybe next year, baby... maybe.

we had a great time with friends and family and asher LOVED the cake. he is so happy, and full of life- a true blessing to our lives.

as james begins a new year of life, he will face new and harder battles with tumors returning to his jaw. the treatment is going to be rougher and the hope is getting smaller. but we know that God is the God of the impossible, and we will continue to live in the hope that he is able to do more than we imagine.

now, let them eat cake!

R.O.C.K in the USA!

2009-05-02T11:36:00.000-07:00

to celebrate abbie's 5th birthday we threw a big rock n' roll party in the backyard! this is the first year the weather in april has cooperated and what a huge blessing that was! i tried to clean out the garage to set up the stage, but there is no way there would have been enough room. her friends all brought their own instruments and with marjorie's help we got a stage set up for them to perfom. the first game was called FREEZE PLAY! everyone played their instruments until abbie held up the STOP sign. whoever made the last noise got to go join abbie in dancing. it came down to two boys, and at this age it's too hard to declare only one winner. our friend noah made a turn table, that he was sliding his record on, like a dj! it was so creative. our next game was called RHYME TIME! we split into groups and they each made up a song using rhyming words. my group simply sang, "see the dog and a frog on the log... yaaaaaa". abbie's group sang "jingle pig, jingle pig wearing a nice wig. he danced a jig and ate a fig, jingle jingle pig". the last group sang about skat the cat, "i had a big cat with a silver hat. i wanted to chat but he ate a rat then he told me to skat... dubi du bop bop du bop and a rat a tat tat." it was a great time! we made ice cream sundaes instead of a cake and then a dance party started. it was a great night.

we are so blessed to have a great group of friends to share good times with. this will be a big year for abbie as she finishes her soccer team, possibly starting a karate class and she will start kindergarten in the fall! we love her so much and are so proud of the creative and compassionate young lady we see.

you can enjoy a glimpse into the party by watching the show! enjoy!

www.sorellimages.com/theparty/

ABBIE IS FIVE!

2009-04-13T08:42:00.000-07:00

last tuesday abbie turned five! it is hard to believe...

we have a big rock n' roll birthday party friday night and will have a lot of fun photos to share! here are a few of the actual birthday, which was packed full of fun.

we love you, little miss abbie. keep loving God and growing into

the beautiful woman we're seeing.

spring soccer started today

2009-03-31T23:55:00.000-07:00

GGGOOOOOOOOOOOOOOAAAAAAAAAAALLLLLLLLLLL!!!!

abbie has been wanting to play on a soccer team and today her 6 week spring session started! it was so cold, but with 3 layers on we headed out to the field. her good friend jack is on her 'team' and they had a great time pretending to score goals! their coach was so enthusiastic and really wanted to make it a great experience for them. he remembered all their names right away, and paid good attention to each of them. it was really refreshing to see. they started at 6pm, getting new shirts and soccer balls. after some free time, they played tag, trying to dribble the ball and catch the coach. when they caught him 3 times he had to do something funny. they chose jumping jacks, push ups and star jumps. i'm sure he is glad i have photos of him doing his star jumps! they loved it though.

they did a few warm up stretches, on the ground... the cold, soaking wet ground. abbie hates getting wet and so she chose to do the stretches standing up. in the end this really paid off, because she never got cold and stayed dry the whole time. you can see the wet and muddy spots all the other kids have on the back of their shirts but not abbie. she is a crack up!

after several more rounds of tag and some different drills with the ball they split up and played 4 on 4 mini games. it is funny to watch them try to chase the ball, get control of the ball, head toward their goal and then get the ball taken away. i had to remind abbie that she wasn't supposed to get mad but to get the ball back. it is an interesting thing to teach her. she isn't used to running after someone to take something away from them, but she'll quickly learn.

her legs got tired, but she loved the whole thing. each tuesday from 6-7 they'll be out there learning, growing and exploring the sport of soccer.

enjoy the slideshow of the day.

www.sorellimages.com/soccer2009/

star wars

2009-03-28T15:18:00.000-07:00

I have recently introduced Abbie to one of my childhood pleasures-Star Wars. I will be honest, even today when I pass by the toy aisle at Wal-Mart, I will purposefully find the Star Wars action figures. I own all the Star Wars DVDs and I am always in the mood to watch one of the films. Therefore it is no surprise that as I was shopping for Christmas gifts, my eyes were drawn to a Star Wars, the original trilogy, video game. Every Thursday is daddy-daughter Star Wars Day when we play the video game. Abbie enjoys playing this game and has learned all of the characters. Sometimes we will even break out my vintage Star War figures and separate them into what episode they appeared. Abbie and I spent some time this week drawing Boba Fett and Darth Vader:

the dance recital costume is here!

2009-03-24T10:16:00.000-07:00

abbie has been in a dance class this year, and today she brought home her costume. i (sarah) spent most of my childhood and highschool in dance and for me, getting the costume is an exciting thing! i had her try it on right away, and in true abbie form, she was annoyed with the itchy sequins. of course.

her recital is in june, at the leid center in lawrence and the theme is ' the beatles'. her dance is 'the yellow submarine', so they are all sailors. she looks so cute in it, and is ready to do her funky chicken moves and strike a pose. enjoy a few images of her looking ready to perform!

a day in the life of a stay-at-home dad

2009-03-23T20:10:00.000-07:00

Cancer has altered our lives in many ways. One of those ways is as a stay-at-home dad. As a young man, I never pictured my self in this role. Fortunately, I have a wife who has a job using her talents as a photographer. Often times she has a morning and afternoon photo shoot and if she is really ambitious she will meet with a friend after that.
Her absence leaves me plenty of time with Abbie and Asher. Saturday was one of those days. It began with our weekly ritual of "Daddy and Daughter Donut Day." I do this every week so Abbie has something special to look forward to with her dad (and its a nice excuse to eat a donut). After feeding the kids lunch, Abbie helped me measure all the ingredients to make bread-Do not be too impressed, the bread machine did most of the work.
Sarah returned home and we played outside on our swing set. I convinced Abbie that a paper machete Easter egg would be a fun project- it was an easy sell. It was very messy and fun. We will paint it after it dries. Abbie and I also spent time searching for The Littlest Pet Shop animals on eBay. We have been searching for the peacock, ostrich, and puffin...however, we lost all of the auctions. Sarah usually makes dinner but I made sandwiches out of the sourdough bread we made earlier. Donuts, lunch, naps, bread, playing outside, paper machete, searching for toys on eBay and even dinner...I think I have found my new profession.

any where but here

2009-03-20T10:01:00.000-07:00

As we know, the biopsy discovered cancer in the area of my right hyoid bone. The cancer is near the original site and and is located under my chin and tougue. This new revelation explains the pain and problems I have been having recently with speaking and eating. As we discussed the location of this new growth, along with seeing it on the CT scan, I was filled with the horrified feeling you get upon receiving bad news. For me, this was the worst possible news I could receive and the only area I did not want the cancer to return. A small bump on my head-no big deal; Caner in my lungs-no problem; The pain from cancer in my hip and sacrum-not fun but I can live with it; This new cancer in my hyoid/mouth/jaw is much larger than I thought (size of a quarter) and therefore has the potential for further damage to speaking and eating.

The doctor (ENT) , who specializes in head and neck cancer, shared different treatment options with us: Do nothing, radiation, or surgery. The doctor said a surgery would be 50 times more difficult than his original surgery...so, No to the way- surgery is not a viable option. And of course doing nothing will allow the cancer to grow. Radiation is the only logical option and in the doctors words, radiaiton will "stun it" and stop the cancer from growing for a while. So eventually it may reappear it this area just like it continues to do in my hip/sacrum area. Therefore radiation will buy me a few years without serious issues. I will start radiaiton treatment as soon as the doctors can develop a treatment plan.

"its positive"

2009-03-17T12:47:00.000-07:00

"Its positve." The word "its positive" are wonderful words. We heard these words in response to our first pregnacy test. I have used them to describe my performance evaluation from my former employer. I always strive to leave a positve impression on the new neighbor or a potential client. As a father my goal is to be a positive example on my children. My day is always better if a have a positive outlook on life. Its wonderful to live a life of positive things. The only time I hate being positive is after a biopsy. Yet the words we received speaking with the nurse today were, "the result is positive." I have at least one confirmed cancerous area near my hyoid bone on my right side; and I am still suspicious of an area under my left jaw bone. These areas are in very delicate locations and wisdom will be needed when attempting to do what is best. The last time I had cancer in this general area it had tremdendous consequences.
I would appreciate your prayers for wisdom. I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge-- that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

crawling to say hi

2009-03-14T17:56:00.001-07:00

asher is 10 months old and crawling all over the place. today he added a wave to his list of 'skills'. here is a quick video of him showing off his talents. sorry about the sunlight that makes him look like he is glowing... he wouldn't crawl in my path of good light. enjoy!

$447.89, $74.27, $17, $48.04, $75.70, $11.63, $259.19, $566.28

2009-03-10T21:06:00.000-07:00

No one likes being sick. On top of feeling terrible you hand over your hard earned cash with the hope that the doctor's services will make you well. I began working for Bank of America in 2000 while I was a student in seminary. Banking was not my primary passion in life, but one reason for continuing my career with BofA after finishing seminary was due to the practical nature of having a good health insurance. For 8 years I spent about $5000 annually for insurance for my entire family. After small copays, the insurance covered our nearly all of our medical bills-an by "our medical bills." I mean primarily my medical bills mine.

Recently, my insurance benefits changed. Along with normal copays, they began requring me to pay for 20% of the medical bills. That doesn't sound too bad on paper but in the real world that 20% adds up fast. In the month of January alone, I have already spent $1476.96 in medical bills. And in comparison, the amount above is a close to the amount I had to pay all last year.

I do not share this so that you can feel sorry for us. I share this so that you might have an accurate understanding of our journey. Cancer is costly in so many ways-finacially is only one of them! Cancer has a profound influence on every area of my/our lives: emotionally, spiritually, physcially, socially, and monitarily.

OOOOOOOOkalahoma...

2009-02-24T10:07:00.000-08:00

[remember in dirty rotten scoundrels, when steve martin ran around as 'rupret' with an eye patch on, yelling 'oklahoma, oklahoma, oklahoma- banging on a pot?! i LOVE that movie...]

hi friends! we are in oklahoma at the cancer treatment center in tulsa. it is going well so far. we've met with several doctors and met many people in similiar situations. they haven't offered anything new, as far as treatment, but we have a few new meds to try for helping the bone pain. the hospital is full of smiling faces and compassionate people. it truly is a different feeling than all other places we've been. we have more appointments tomorrow and thursday and will keep you posted on what we're told.

asher and i have been going with james to most appointments, and he's done fairly well being in the stroller (asher, not james). i know we are here to get some new ideas for james, but i think our purpose may be greater than that. and it has to do with our smiling son. he is a joy magnet and an instant smile maker. for so many people who are struggling through treatment, his little smile is making days better. i can't keep track of how many people are saying 'he is so cute' 'look at that huge smile' 'that just made my day'... he is making a difference everywhere we go. it is a reminder to us how much our children do bring joy, and we are blessed to be able to bring a bit of Christ's joy to this place.

i have a good post to do about our fun trip to colorado, but for now will just share a few fun photos.

home alone

2009-02-20T12:54:00.000-08:00

I was left home alone. Similar to a movie of the same name, my entire family left me home alone and traveled by air to a distant city. Sarah, Abigail and Asher traveled to Denver to visit Sarah’s sister for six days. All alone and seized by fear, my survival instincts kicked-in as I relied on the distant memories from days as a bachelor. I will be very transparent and admit to something I do not do very often-I ate fast food and even indulged in a little Dairy Queen. Shhh. In these desperate economic times I made sure to order from the dollar menu and I even ordered a kid's meals from Soni with a coupon for $1.99. I was rather thrifty! Some moments were even reminiscent of my college days as I found myself eating a free meal with Friends and Parents-in-law (Thanks to the Alvarezes, Rotts, Franzes and my dad). Okay, enough talk about food.

As in introvert, I enjoyed time to myself; something I never find much of being a stay at home husband and father. The silence was strange but gave me time to think about life. An additional benefit of being home alone was a constantly clean house. A tidy house can also be a rarity with children these days. I enjoyed it so much I cleaned the entire house and I mean cleaned the house: cleaned bathrooms, dusted, vacuumed, did the laundry and even put it away.

I had more free time than normal and I kept myself busy by watching the entire fourth season of LOST on DVD. And I enjoyed every minute of it! Before some of you freak out and in defense of my bachelor behavior, I love LOST and it was a shortened 14 episodes rather than 24! I even watched every episode in surround sound with the walls vibrating (I was taking full advantage of an empty house).

Six days had passed, my family was traveling home and I had survived! I showered, shaved my beard and tearfully said good-bye to my new imaginary friend, Wilson. Although I enjoyed my time alone I was happy to welcome my family home. The love of my wife and the sounds of children are a priceless treasure. As I waited “behind the yellow line” in front of gate 39 at KCI, all that I value most in life was about to walk through the door (I accidentally crossed a line with my big toe while waiting and was quickly reprimanded by the airport security).

The first one to walk through the door? Abigail. When she finally noticed me standing at the door, she ran the rest of the way, discarded her heavy back pack and embraced me and kissed me over and over while saying “Oh daddy, daddy, daddy; Oh daddy, daddy, daddy, I missed you.” As my heart melted, I affirmed her words of affection. Man-oh-man, it doesn’t get better than that! What felt like forever later, a very weary Sarah exited the door, pushing a stroller and carrying a load of other things. Wow, what a lady! Following her was a flight attendant carrying a sleepy Asher. Abbie and I went to get the SUV to pick up Sarah and Asher. I wanted Abbie to know how happy I was to see her so I brought her a treat. As we were exiting the parking lot I opened and handed Abbie a delicious chocolate milk (from my kid’s meal earlier this week) and she instantly spilt all of it on the seat. My family is indeed home, spilt mik and all!

A footnote: As a thoughtful wife, Sarah made me 2 meals to heat up for dinner and as a forgetful husband, I forgot all about it. Opps.

dancing abbie

2009-01-22T11:39:00.000-08:00

I LOVE watching Abigail when she is passionately and completely engaged in her activities. I delight in moments when she is in her own world singing songs. Sometimes, As my gaze is fix upon her, I will catch her eye and she will respond with a smile. Other moments I witness Abbie using her fertile imagination as she plays with toys. I am always amazed at her focus and concentration when she creates art. She is the most gifted artist her age. Also, as a father, I love seeing Abbie dribble the soccer ball around the yard and if I am able physically, I enjoy joining her. And in my completely biased opinion, she it really skilled soccer player.

Today I enjoyed observing her in dance class. She attends dance class every Tuesday and today parents were invited to watch. There are probably 20 other little girls in the room, but only one catches my eye and has my absolute attention. All of the other little dancers might be more gifted but only one captures my heart. Somehow as I watch everyone else just fades away.

I hope you enjoy these video clips as much as I do...

james' health

2009-01-19T15:10:00.000-08:00

This is my second week of physical therapy and I have some noticeable improvements. I was unable to lift my leg from all positions and I have regained some strength-I am pretty happy about this! My leg remains really weak but small improvements have made a huge difference. My range of motion in my hip joint remains limited and stiff. We are unsure of what is going on inside my joint but I do know it doesn’t move normally, which has made walking and moving around really awkward. I am waiting for an X-ray to help guide us in my rehabilitation. If the doctor who specializes in bones and cancer concludes that I have no major issues, the therapist and I will really work on moving this hip. I am fantasizing of a day when I can walk and maybe even run around and play with children again.
I have noticed another small lump that hurts on my throat. Painful bumps, lumps, spots or anything unusual always concern me. I have scheduled a CT scan so I can receive a more accurate diagnosis. On the one hand I always hope that it’s no big deal, but on the other hand, my history tells me, “You have a problem, sir.” The tumors in my lungs have been consistently larger this year and I still have a cancerous area on my head. It is clear that this disease is progressing and there is no definitive treatment. I am considering visiting MD Anderson again in Houston, TX. They are on the cutting edge of cancer research and perform several clinical trials. A clinical trial may be an option for me in the future however I would have to live in Houston while I was using the drug.
For the most part I am feeling well and more mobile so long as I sleep enough!!

happy new year

2009-01-02T14:52:00.000-08:00

HAPPY NEW YEAR! We celebrated and ushered in the new year with friends, food and Wii Nintendo, which equals lots of fun. This year was a monumental year because we thought it would be fun to have Abbie join in on the festivities. Abbie loved staying up late and had lots of fun doing it. And by-the-way, she is really good at Wii bowling!

chicken pox and santa claus

2008-12-30T21:03:00.001-08:00

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

2008-12-18T20:12:00.000-08:00

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!

2008-12-07T17:43:00.000-08:00

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

2008-12-01T10:37:00.001-08:00

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

2008-11-25T19:12:00.000-08:00

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)

2008-11-25T10:55:00.001-08:00

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

2008-11-18T21:55:00.000-08:00

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

2008-11-08T14:43:00.000-08:00

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

2008-11-08T13:28:00.000-08:00

happy halloween

2008-10-31T13:56:00.001-07:00

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

2008-10-28T15:21:00.000-07:00

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

2008-10-23T22:21:00.001-07:00

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

2008-10-23T22:14:00.000-07:00

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

2008-10-22T22:59:00.001-07:00

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

2008-10-08T20:53:00.000-07:00

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

2008-09-30T09:57:00.000-07:00

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

2008-09-30T09:30:00.000-07:00

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.

2008-09-26T12:56:00.000-07:00

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

2008-09-15T16:02:00.000-07:00

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

2008-09-13T14:28:00.000-07:00

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

2008-09-11T18:01:00.000-07:00

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"

2008-09-04T20:44:00.000-07:00

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.