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!
December 22, 2010
Its time for some RISK
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.
December 9, 2010
our recent obsession
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!
December 1, 2010
thoughts from the valley
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.
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.
November 4, 2010
happy birthday wyatt!
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!
September 15, 2010
what we're up to...
this week has been better... james is feeling less pain and able to sleep for larger blocks of time.
translation: i will have a crush on jack & tyler forever.
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.September 7, 2010
asher goes to school!
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/
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/
August 31, 2010
first grade fun
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.
it is going to be a great year!
back to the bottom
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.
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.
August 24, 2010
not so easy
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"}
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.
August 23, 2010
happy birthday mom!
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!
we love, love, love you!
August 16, 2010
FIRST GRADE!!!???!!
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!
August 14, 2010
sweet zeke
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/
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/
August 8, 2010
congratulations rachel & derek!
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.
July 28, 2010
BIG CEDAR LODGE
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!
July 16, 2010
friday....goooooiiingggg hhoooooooome!
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!
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!
July 13, 2010
a quick update
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
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
June 24, 2010
quick surgery update
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.
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.
June 22, 2010
surgery on thursday
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
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!
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!
June 20, 2010
for father's day
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!
June 8, 2010
what a few days we've had...
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!
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!
May 28, 2010
mourning for my sister - posted by sarah
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.
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.
April 23, 2010
a lovely rainy day
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.
April 12, 2010
a QUICK update on life
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.
March 27, 2010
one...two...
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!'
March 18, 2010
Abbie's third day of skiing
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!
March 16, 2010
perfect timing... and colorado!
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!
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!
March 10, 2010
what we've all been waiting for...
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!!!
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!!!
March 4, 2010
it's the final countdown...
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.
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.
February 19, 2010
in the home stretch...
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!
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!
February 16, 2010
DISNEY WORLD!!
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
February 13, 2010
happy valentine's day!
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!
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!
February 7, 2010
a quick trip to the ER
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.
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...
February 3, 2010
whistle while you wait...
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!
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!
January 27, 2010
treatment #4... done!
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!!
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!!
January 25, 2010
promised some photos
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]
January 24, 2010
week #3 recap... getting ready to go for week #4
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....
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....
January 14, 2010
week #2 update
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
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
January 10, 2010
thank you for serving us
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.
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.
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