Evan's Break From Treatment
Dear Family & Friends,
It’s been a while – sorry for the long silence. Evan is hanging in there. It’s been four weeks since his last radiation treatment, and he’s been on a break from chemotherapy since then as well. We had hoped that he would be feeling a lot better by now, but the improvements have been fairly subtle.
The first two weeks after the end of radiation turned out to be the worst. He finally started experiencing the nausea that we’d been warned about (but thought we had avoided), and he was about as weak and tired and sore as he’s ever been. The last couple weeks have been a little better though. The nausea is gone now, and we’ve seen some mild improvements in his energy level. Also, his personality and sense of humor has started to come back lately. All good signs! The progress is slow, but we’re hoping it will continue even after he goes back on the chemo.
As for the blood clot concerns, they remain a constant issue but not a major threat. The cancer’s effect on the blood makes it difficult for the blood thinners to keep things stable, but he gets it checked every week (or twice a week when it starts doing crazy things) and the doctors adjust the Coumadin accordingly. It’s been a little annoying to deal with, but it’s probably a walk in the park compared to what people with diabetes have to go through, so I’m sure we’ll get used to it.
All in all, the break from treatment has been good. We’ve enjoyed having fewer doctor appointments, fewer medications to take, and Evan has been able to get out a little more too. Last weekend, Evan felt well enough to spend the better part of two whole days with his mom and siblings as we celebrated an early Thanksgiving. It was the first time Evan and his brothers and sisters had been all together in several years. Monte, and his family, came up from Arizona, and his sister, Joy, came out from North Carolina. Alan and Jan were already here in Utah. We had a great time, and really enjoyed seeing everybody.
This week we’re looking forward to our big trip to Southern California. We leave on Wednesday and won’t be back until Friday of the next week. It should be just what the doctor ordered, for all of us. We’re planning to have lots of fun and come back ready to face the next phase of treatment.
The other big event for this week is that Evan has his next MRI tomorrow (Tuesday). It will give us the first look at the tumor since he started treatment. If the images are clear, it should give us the first indications of how effective the radiation has been. The doctors have warned us that there is a possibility that the images won’t be clear since the radiation causes a lot of swelling around the tumor, and sometimes it takes more than four weeks for the inflammation to subside. But we’re crossing our fingers for clear pictures and good news! I’ll be sure to send out a quick e-mail tomorrow night and share the results with you before we leave town.
We hope this letter finds you all doing well, and we wish you a very Happy Thanksgiving!!! Thanks for all your prayers!
Love,
Margot
October 13, 2007
4 Treatments Left!
Dear Family & Friends,
It’s been a little while since I wrote last, but as they say, “no news is good news.” Things were a little crazy last week after he was released from the hospital, trying to make adjustments to his blood thinning medication and get his blood flow stable. But we seem to have worked out the kinks now and he’s been stable for the last 5 days. So this week has been pretty uneventful, and that’s the way we like it.
The BIG NEWS is that Evan has just 4 treatments left. His last treatment will be next Thursday the 18th. We can hardly wait for this phase of the treatment to be over. He is just completely depleted of energy and strength. Except for the daily trip to radiation, he doesn’t want to go anywhere or do anything except rest.
We’re really hoping he starts to feel better during his one-month vacation from all the treatments. In fact we’re counting on it - we just cashed in all Evan’s frequent flier miles and got four airline tickets to Los Angeles. Some of our dearest and closest friends have a little one-bedroom condo right near the beach, south of Los Angeles, and have graciously offered to let us stay there for some serious rest and relaxation. We leave the day before Thanksgiving and the day after Evan’s next MRI. We hope it will be “just what the doctor ordered” for all of us!
As always, thank you all for your continued prayers on Evan’s behalf! We appreciate it so much!
Love,
Margot
Dear Family & Friends,
It’s been a little while since I wrote last, but as they say, “no news is good news.” Things were a little crazy last week after he was released from the hospital, trying to make adjustments to his blood thinning medication and get his blood flow stable. But we seem to have worked out the kinks now and he’s been stable for the last 5 days. So this week has been pretty uneventful, and that’s the way we like it.
The BIG NEWS is that Evan has just 4 treatments left. His last treatment will be next Thursday the 18th. We can hardly wait for this phase of the treatment to be over. He is just completely depleted of energy and strength. Except for the daily trip to radiation, he doesn’t want to go anywhere or do anything except rest.
We’re really hoping he starts to feel better during his one-month vacation from all the treatments. In fact we’re counting on it - we just cashed in all Evan’s frequent flier miles and got four airline tickets to Los Angeles. Some of our dearest and closest friends have a little one-bedroom condo right near the beach, south of Los Angeles, and have graciously offered to let us stay there for some serious rest and relaxation. We leave the day before Thanksgiving and the day after Evan’s next MRI. We hope it will be “just what the doctor ordered” for all of us!
As always, thank you all for your continued prayers on Evan’s behalf! We appreciate it so much!
Love,
Margot
October 1, 2007
Home from the Hospital!
Hi Everyone,
Just a quick update to let you know Evan made it home from the hospital today (Monday). His blood wasn’t quite as thinned as they wanted it to be, but they said he could go home as long as I was willing to learn how to give him the shots he needs. He’ll only need the shots for two more days, and then he can maintain it with a different blood thinner (Coumadin) which he can take orally (thank goodness). Evan was really sick of being there, so we were relieved to find a way to get him out of there.
We were also happy to get Evan out of the hospital in time to keep his radiation appointment this morning, and also his appointment with the Neuro-Oncologist, Dr. Choucair, this afternoon. We haven’t met with Dr. Choucair since the biopsy, so we were pretty anxious to get his view on how Evan’s treatment was going. He thought Evan looked really good, and was happy with how the medications have improved Evan’s speech and memory. He said that the blood clots are extremely common with this type of cancer, but that the blood thinners should help prevent any further complications.
A heartfelt thank you to everyone who called, visited, or sent something to Evan in the hospital – that was so thoughtful! A huge thank you to my parents who put in long shifts at home with my kids and my laundry this weekend. And many thanks to everyone who said a few extra prayers for us this past week!
As of today, Evan has 13 radiation treatments left. If we don’t hit any more snags, his last treatment will be on October 18th. His next MRI is scheduled for November 20th.
Take care, and we’ll keep you posted.
Love,
Margot
Hi Everyone,
Just a quick update to let you know Evan made it home from the hospital today (Monday). His blood wasn’t quite as thinned as they wanted it to be, but they said he could go home as long as I was willing to learn how to give him the shots he needs. He’ll only need the shots for two more days, and then he can maintain it with a different blood thinner (Coumadin) which he can take orally (thank goodness). Evan was really sick of being there, so we were relieved to find a way to get him out of there.
We were also happy to get Evan out of the hospital in time to keep his radiation appointment this morning, and also his appointment with the Neuro-Oncologist, Dr. Choucair, this afternoon. We haven’t met with Dr. Choucair since the biopsy, so we were pretty anxious to get his view on how Evan’s treatment was going. He thought Evan looked really good, and was happy with how the medications have improved Evan’s speech and memory. He said that the blood clots are extremely common with this type of cancer, but that the blood thinners should help prevent any further complications.
A heartfelt thank you to everyone who called, visited, or sent something to Evan in the hospital – that was so thoughtful! A huge thank you to my parents who put in long shifts at home with my kids and my laundry this weekend. And many thanks to everyone who said a few extra prayers for us this past week!
As of today, Evan has 13 radiation treatments left. If we don’t hit any more snags, his last treatment will be on October 18th. His next MRI is scheduled for November 20th.
Take care, and we’ll keep you posted.
Love,
Margot
September 28, 2007
A Bump In The Road
Hi Everyone,
Well, we hit a little bump in the road yesterday. During our weekly meeting with Dr. Watson after radiation on Wednesday, Evan told him that he was having consistent pain in his right leg. Dr. Watson said that, among other things, it could be a blood clot. So he scheduled an appointment for Evan to have an ultrasound on his legs. Evan had the ultrasound done yesterday (Thursday) at 5:00 pm. His left leg tested fine and clear, but they found a significant clot in Evan’s right leg, from just above the knee down to his ankle.
They admitted him to the hospital, ran more tests to check for any additional clots in his lungs, and started him on blood thinners. We got the results back from the additional tests late last night, and they found two more clots (small ones) in his left lung. At the moment I’m not completely clear what all the implications of this are, except that he will definitely be on blood thinners from now on. He’ll be in the hospital at least until Monday while they adjust and manage the medication, and get his blood down to a safe level.
Thankfully we had the ultrasound done here in the American Fork Hospital, so that’s where they admitted him. I’ll be able to come home to sleep at night, it will be easy for the kids to see him whenever they want, and he’s got his own room – so it won’t be too bad. Plus, my Mom and Dad are here so they keep things running when I’m not at home.
In other news, Evan’s hair finally started falling out, in big clumps, last Sunday. By Wednesday he looked pretty mangy, so Wednesday night we had a little head-shaving party. I can report that Evan has a perfectly shaped head, and looks great! The Decadron that he’s taking, even though they’ve lowered the dose, is still causing a lot of swelling in his face and head so we were having a hard time finding any baseball hats that were big enough to fit him, but Evan’s good friend Harold surprised him with a Boston Red Sox hat on Wednesday night, and so far that one fits the best! Thanks Harold!
Anyway, that’s the latest – we’ll keep you posted! Thanks for your prayers!
Love,
Margot
Hi Everyone,
Well, we hit a little bump in the road yesterday. During our weekly meeting with Dr. Watson after radiation on Wednesday, Evan told him that he was having consistent pain in his right leg. Dr. Watson said that, among other things, it could be a blood clot. So he scheduled an appointment for Evan to have an ultrasound on his legs. Evan had the ultrasound done yesterday (Thursday) at 5:00 pm. His left leg tested fine and clear, but they found a significant clot in Evan’s right leg, from just above the knee down to his ankle.
They admitted him to the hospital, ran more tests to check for any additional clots in his lungs, and started him on blood thinners. We got the results back from the additional tests late last night, and they found two more clots (small ones) in his left lung. At the moment I’m not completely clear what all the implications of this are, except that he will definitely be on blood thinners from now on. He’ll be in the hospital at least until Monday while they adjust and manage the medication, and get his blood down to a safe level.
Thankfully we had the ultrasound done here in the American Fork Hospital, so that’s where they admitted him. I’ll be able to come home to sleep at night, it will be easy for the kids to see him whenever they want, and he’s got his own room – so it won’t be too bad. Plus, my Mom and Dad are here so they keep things running when I’m not at home.
In other news, Evan’s hair finally started falling out, in big clumps, last Sunday. By Wednesday he looked pretty mangy, so Wednesday night we had a little head-shaving party. I can report that Evan has a perfectly shaped head, and looks great! The Decadron that he’s taking, even though they’ve lowered the dose, is still causing a lot of swelling in his face and head so we were having a hard time finding any baseball hats that were big enough to fit him, but Evan’s good friend Harold surprised him with a Boston Red Sox hat on Wednesday night, and so far that one fits the best! Thanks Harold!
Anyway, that’s the latest – we’ll keep you posted! Thanks for your prayers!
Love,
Margot
September 21, 2007
2 Weeks Down, 4 To Go!
Hi Everybody,
Sorry it’s been a while since my last update – there just aren’t enough hours in the day (or energy cells in my body)! By the time I get to a point in the day where I could sit down and write a letter (usually late at night) I’m just too exhausted to think and type at the same time. Anyway, thanks for being patient and for keeping us in your thoughts and prayers.
Evan had his 10th radiation treatment yesterday (Wednesday). So that’s 2 weeks down and 4 weeks to go. Honestly, at the moment, that sounds like an eternity to both of us. Maybe next week it will feel a little better – then he can say he’s half way done (with radiation anyway).
The combination of radiation and chemo is starting to take its toll on Evan. However, we’ve been told it could get a lot worse, so we’re trying to be grateful for all the problems he hasn’t had yet. He hasn’t started losing his hair yet. He hasn’t had problems with nausea. His throat, mouth, & taste buds have only been slightly affected. His skin hasn’t felt burned or irritated. And his speech and short-term memory has actually improved (I’m especially grateful for that!).
What he does feel is tired, weak, and his muscles (especially his arms and legs) just ache a lot. He basically feels like he has a bad case of the flu right now (minus the runny nose).
The weakness and fatigue are caused by the chemo & radiation, but the muscle aches are actually caused by the anti-inflammatory/steroid he’s taking, called Decadron. He’s been taking a higher dose of the Decadron ever since the biopsy, to reduce the swelling in his brain. Unfortunately, it comes with lots of nasty side-effects including significant damage to muscle tissue. So, they’ve been gradually reducing his dose over the last two weeks because of the damage it can cause. However, as they lower the dose he may start having problems with speech and short-term memory loss again. So, it’s a catch 22 – we can’t live with it and we can’t live without it.
In addition to the Decadron, Evan has about 5 other medications he takes to minimize the side-effects of the chemo medication. Antibiotics, anti-nausea pills, stuff to fight the “thrush” or yeast infections in his mouth and throat, etc. It’s really crazy to see all the stuff he has to take. He has the mother of all pill boxes, I can tell you that. One cute thing about it though – Lindsay announced last week that from now on she wanted to be Daddy’s “Medicine Girl,” as she calls it. So, four times a day (if she’s home) she takes Evan his water glass and pills. She is very proud of this responsibility. It’s just about the cutest thing ever! I wonder if we have a future nurse on our hands.
I wanted to tell you about several other little “silver-lining” events, like that, that have happened over the last couple weeks also.
Yesterday we received a thick envelope from our darling niece, Emma. Emma is the youngest daughter of Evan’s sister, Joy, and her husband Tim. They live in North Carolina. A few weeks ago at school, Emma told her teacher that she was worried about her Uncle Evan and explained the situation. Well, Emma’s sweet teacher decided to have all the children in Emma’s class make get-well cards for Evan. We had the most wonderful time opening and reading those cards yesterday. We just all sat around looking at them, saying “look at this one, look at this one.” They were absolutely delightful. We’re going to make a special scrapbook of all those cards. Thank you so much Emma!!!!!
Evan’s co-workers at BYU brought him a very cool “get-well-bear” from the Build-A-Bear Workshop. It was delivered by Evan’s wonderful boss and his sweet wife. It arrived wearing a BYU Cougars T-shirt, blue jeans, some very snazzy tennis shoes, and the coolest pair of sunglasses you’ve ever seen. It also came equipped with a little bear-sized football, of course! That has become a highly coveted item in our house. Even though it still belongs to Evan, Evan has graciously agreed to let the kids take turns having it sit in their bedrooms from day to day. Thanks to our friends in Financial Services at BYU – and especially those who have taken on extra work assignments to cover Evan’s responsibilities there. We just can’t thank you enough!
Our dear friend and neighbor organized a small army of men from our ward to take turns driving Evan to radiation twice a week for me. It has been such a blessing I can’t begin to express my gratitude. Not only has it eased the burden for me of driving time and gasoline expense, it has been the best thing ever for Evan. It’s been so good for him to have some interaction with other people, especially other men. It’s been so good! I think one of the hardest things for him has been not going to work and not having that interaction with co-workers, and other people in general, that was such a huge part of his life before. From the bottom of my heart, I thank you guys!
We have received so many other acts of kindness I can’t begin to list them all – phone calls, e-mails, visits, bread, babysitting, dinners, get well cards, gift certificates, lunches and movies with friends, and on and on. We have been so touched by the out-pouring of love and support. Thank you to each and every one of you! Also, a special thank you to my Mom. She has been here for two weeks already, and is planning to stay for another two or three. She’s going to need a serious vacation after this. Thanks Mom!!!
Well, hopefully that caught you up to speed a little bit. We send you all our love and gratitude!
Love,
Margot
Hi Everybody,
Sorry it’s been a while since my last update – there just aren’t enough hours in the day (or energy cells in my body)! By the time I get to a point in the day where I could sit down and write a letter (usually late at night) I’m just too exhausted to think and type at the same time. Anyway, thanks for being patient and for keeping us in your thoughts and prayers.
Evan had his 10th radiation treatment yesterday (Wednesday). So that’s 2 weeks down and 4 weeks to go. Honestly, at the moment, that sounds like an eternity to both of us. Maybe next week it will feel a little better – then he can say he’s half way done (with radiation anyway).
The combination of radiation and chemo is starting to take its toll on Evan. However, we’ve been told it could get a lot worse, so we’re trying to be grateful for all the problems he hasn’t had yet. He hasn’t started losing his hair yet. He hasn’t had problems with nausea. His throat, mouth, & taste buds have only been slightly affected. His skin hasn’t felt burned or irritated. And his speech and short-term memory has actually improved (I’m especially grateful for that!).
What he does feel is tired, weak, and his muscles (especially his arms and legs) just ache a lot. He basically feels like he has a bad case of the flu right now (minus the runny nose).
The weakness and fatigue are caused by the chemo & radiation, but the muscle aches are actually caused by the anti-inflammatory/steroid he’s taking, called Decadron. He’s been taking a higher dose of the Decadron ever since the biopsy, to reduce the swelling in his brain. Unfortunately, it comes with lots of nasty side-effects including significant damage to muscle tissue. So, they’ve been gradually reducing his dose over the last two weeks because of the damage it can cause. However, as they lower the dose he may start having problems with speech and short-term memory loss again. So, it’s a catch 22 – we can’t live with it and we can’t live without it.
In addition to the Decadron, Evan has about 5 other medications he takes to minimize the side-effects of the chemo medication. Antibiotics, anti-nausea pills, stuff to fight the “thrush” or yeast infections in his mouth and throat, etc. It’s really crazy to see all the stuff he has to take. He has the mother of all pill boxes, I can tell you that. One cute thing about it though – Lindsay announced last week that from now on she wanted to be Daddy’s “Medicine Girl,” as she calls it. So, four times a day (if she’s home) she takes Evan his water glass and pills. She is very proud of this responsibility. It’s just about the cutest thing ever! I wonder if we have a future nurse on our hands.
I wanted to tell you about several other little “silver-lining” events, like that, that have happened over the last couple weeks also.
Yesterday we received a thick envelope from our darling niece, Emma. Emma is the youngest daughter of Evan’s sister, Joy, and her husband Tim. They live in North Carolina. A few weeks ago at school, Emma told her teacher that she was worried about her Uncle Evan and explained the situation. Well, Emma’s sweet teacher decided to have all the children in Emma’s class make get-well cards for Evan. We had the most wonderful time opening and reading those cards yesterday. We just all sat around looking at them, saying “look at this one, look at this one.” They were absolutely delightful. We’re going to make a special scrapbook of all those cards. Thank you so much Emma!!!!!
Evan’s co-workers at BYU brought him a very cool “get-well-bear” from the Build-A-Bear Workshop. It was delivered by Evan’s wonderful boss and his sweet wife. It arrived wearing a BYU Cougars T-shirt, blue jeans, some very snazzy tennis shoes, and the coolest pair of sunglasses you’ve ever seen. It also came equipped with a little bear-sized football, of course! That has become a highly coveted item in our house. Even though it still belongs to Evan, Evan has graciously agreed to let the kids take turns having it sit in their bedrooms from day to day. Thanks to our friends in Financial Services at BYU – and especially those who have taken on extra work assignments to cover Evan’s responsibilities there. We just can’t thank you enough!
Our dear friend and neighbor organized a small army of men from our ward to take turns driving Evan to radiation twice a week for me. It has been such a blessing I can’t begin to express my gratitude. Not only has it eased the burden for me of driving time and gasoline expense, it has been the best thing ever for Evan. It’s been so good for him to have some interaction with other people, especially other men. It’s been so good! I think one of the hardest things for him has been not going to work and not having that interaction with co-workers, and other people in general, that was such a huge part of his life before. From the bottom of my heart, I thank you guys!
We have received so many other acts of kindness I can’t begin to list them all – phone calls, e-mails, visits, bread, babysitting, dinners, get well cards, gift certificates, lunches and movies with friends, and on and on. We have been so touched by the out-pouring of love and support. Thank you to each and every one of you! Also, a special thank you to my Mom. She has been here for two weeks already, and is planning to stay for another two or three. She’s going to need a serious vacation after this. Thanks Mom!!!
Well, hopefully that caught you up to speed a little bit. We send you all our love and gratitude!
Love,
Margot
September 9, 2007
Treatment Begins
Dear Family & Friends,
Evan started his radiation treatment on Thursday. We thought it would start on Wednesday, but it turned out that they needed to double check the alignment points for the radiation beams and make sure everything lined up the way they wanted it to. So they spent his Wednesday appointment doing that.
He had his first official treatment on Thursday and the second one on Friday. He hasn’t felt any side-effects yet, which has been a relief, but they told us he might not feel any significant changes until later in the second week.
As for the chemotherapy, he starts that on Monday. Again, we thought he would start chemotherapy on the same day as the radiation, but our insurance company requires that we order the drug through a specialty pharmacy that only delivers through the mail. Anyway, by the time we jumped through all their hoops and waited for them to process the order, Monday was the earliest delivery date. We’re learning that nothing is ever as simple and straight-forward as you think it will be.
So this coming week will be the first full week of both radiation and chemotherapy. For the next 6 weeks he’ll have radiation 5 days a week (Monday thru Friday), and take the chemo every day (7 days a week). It certainly won’t be fun, but they’ve given him lots of other medications to counter the potential side-effects so hopefully that will keep them to a minimum. We’re just crossing our fingers and hoping that the next six weeks go by really fast.
The most interesting thing about this past week has been sitting in the waiting room with all the other patients waiting for their radiation treatments. It’s a humbling experience to realize how many other people are going through the same thing we are. We’ve seen teenagers, elderly people, men and women of all ages and walks of life. They’re all there with little or no hair, in various stages of health, and various stages of life. I sit and wonder what each of their stories might be. Somehow it’s comforting to see them - to know that we aren’t alone, to know that we haven’t been singled out for this ordeal, to know that this happens to hundreds of people just like us everyday.
In the back, near the treatment rooms, they have a big brass bell attached to the wall. On your last day of radiation you get to ring that bell. Every day that we’ve been there, I’ve heard at least one person ring the bell. I’ve quickly grown to love the sound of that bell. It tells me that somebody else made it through this and we will too.
Thanks for all your prayers – we need every one of them!
All my love,
Margot
Dear Family & Friends,
Evan started his radiation treatment on Thursday. We thought it would start on Wednesday, but it turned out that they needed to double check the alignment points for the radiation beams and make sure everything lined up the way they wanted it to. So they spent his Wednesday appointment doing that.
He had his first official treatment on Thursday and the second one on Friday. He hasn’t felt any side-effects yet, which has been a relief, but they told us he might not feel any significant changes until later in the second week.
As for the chemotherapy, he starts that on Monday. Again, we thought he would start chemotherapy on the same day as the radiation, but our insurance company requires that we order the drug through a specialty pharmacy that only delivers through the mail. Anyway, by the time we jumped through all their hoops and waited for them to process the order, Monday was the earliest delivery date. We’re learning that nothing is ever as simple and straight-forward as you think it will be.
So this coming week will be the first full week of both radiation and chemotherapy. For the next 6 weeks he’ll have radiation 5 days a week (Monday thru Friday), and take the chemo every day (7 days a week). It certainly won’t be fun, but they’ve given him lots of other medications to counter the potential side-effects so hopefully that will keep them to a minimum. We’re just crossing our fingers and hoping that the next six weeks go by really fast.
The most interesting thing about this past week has been sitting in the waiting room with all the other patients waiting for their radiation treatments. It’s a humbling experience to realize how many other people are going through the same thing we are. We’ve seen teenagers, elderly people, men and women of all ages and walks of life. They’re all there with little or no hair, in various stages of health, and various stages of life. I sit and wonder what each of their stories might be. Somehow it’s comforting to see them - to know that we aren’t alone, to know that we haven’t been singled out for this ordeal, to know that this happens to hundreds of people just like us everyday.
In the back, near the treatment rooms, they have a big brass bell attached to the wall. On your last day of radiation you get to ring that bell. Every day that we’ve been there, I’ve heard at least one person ring the bell. I’ve quickly grown to love the sound of that bell. It tells me that somebody else made it through this and we will too.
Thanks for all your prayers – we need every one of them!
All my love,
Margot
Subscribe to:
Posts (Atom)
