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!!
January 27, 2010
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.
January 8, 2010
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!
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!
January 7, 2010
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.
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.
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