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!

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!!

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]

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....

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

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.

houston update

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

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

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

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

chemotheraphy

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

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

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

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

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

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

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

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

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

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

a disney preview & a trip to MD...

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

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

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

Merry Elf-Dancing Christmas

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