Saturday, November 18, 2017
Thursday, July 13, 2017
Choosing Joy Isn't Always Easy!
I came
across this quote the other day and decided it fits where I am right now.
"YOU don’t choose
your life; it chooses you. There’s no point asking why life has reserved
certain joys or griefs, you just accept them and carry on." – Paulo Coelho
Let’s
just be real here. Choosing joy is hard
work. It can be both mentally and
physically exhausting. Making the
decision to not let life’s circumstances weigh you down and keep you from
moving forward is tiring; and I don’t always succeed at it either.
Being a
mom is tough. Being a wife is tough. And living with someone with brain cancer is really
rough. There is no other way to describe
it. You have your good days and your bad
and some days have elements of both. I
spend my days living by a calendar of appointments, supplements, medications,
and meal planning. In a way, this has
been good for me, as I’ve always loved structure and schedules. I love knowing there is a plan in place that
helps me determine what to expect next.
But
that doesn’t mean it doesn’t get hard when things don’t go as planned. When seizures sneak in, and you have to
remind someone how to eat, drink, and swallow; it can be hard to choose
joy. For the first decade of our
marriage, Benjamin was the person I received my strength and encouragement from. Having our roles reversed has been humbling
and saddening to say the least. When the
person who has provided you with strength for so long needs your help to get
dressed, and walk, and stand back up when they fall down, it can be hard to
smile and keep on choosing joy. Sometimes, it takes every waking breath in you
to keep smiling and pushing on.
At the same time, I believe that
God laid that on my heart for my theme for this year, not just because last
year was a hard year, but because He knew that this year had the potential to
be so much harder. He took me at what I
thought was my worst and showed me how to turn my situations around and choose
joy. Little did I know when I started
this journey that it was going to get so much harder, and that choosing joy was
going to be a struggle most days. Yet in
true God fashion, he knew what I was going to need and prepared me for it
before I even knew I needed it. God knew
I was going to need joy to be a habit before the intensity of these storms hit
and He knew I was going to need others to help hold me accountable for it.
Do you remember that old adage
about turning lemons into lemonade? That’s
something that I am learning to do on a daily basis… When things go wrong, as
they often do, I take a look at the situation and I smile and try to turn it
into something good…
Here are some examples for you:
*I had my kids all set up to play
in the driveway with sidewalk chalk while I mowed the other day, but the lawnmower
wouldn’t start. I grabbed some chalk and
bubbles and jumped right into playing. They
wouldn’t remember that I let them play in the driveway while I mowed, but they
will never forget that I played with them!
*Another seizure? This is a hard one, but I smile and remind
the kids, it’s been 10 days since the last one and that is a new record for the
past two months! We pray it through,
take silly face pictures while daddy recovers and remember to smile and talk
about God’s blessings!
 |
| Take that seizures! |
*The
Tahoe needed repair again this week, but praise God the big kids can be in
booster seats so we all can fit in the truck until we get it done... being able
to leave the house makes everyone around here choose joy ;-).
*I can’t
drag 5 people to the store every time I run out of something so I have started
planning better, and using up things in the pantry that might never get
used! Every time I look at my grocery
budget it makes me smile these days, as I’m not buying all the little extras (And
seriously, KROGERCLICKLIST literally helps me choose joy every week)
*The
hardest challenge is every time we get a negative report from a doctor. I am
trying to see the light in this as well, as God is using every day of this
journey to bring us closer to him and to grow each of us as individuals. Then I hear of others in the same situation
who aren’t even faring as well as Ben has through this whole ordeal, and my
heart hurts for them and I remember to be thankful for every
little moment.
It doesn’t always work, and some
days I need lots of reminders (because life is HARD, ya'll!). I lose my mind on my kids, and I can’t even
process all that is going on around me some days.
I'm trying to remember to turn on my favorite playlist so the kids and I
can dance and sing together. Who can choose to be sad when you are dancing
and singing worship music with preschoolers (it’s impossible, seriously). Plus,
they know most of the words and who can be sad when a bunch of 3 & 5 year
olds are mixing up words on your favorite songs, right?
If you
are one of those “lucky” few who gets to see me at my worst (i.e. when I just
can’t choose joy anymore), thank you for your encouragement, support and
understanding. The few minute escapes to grab dinner, go for a run, and when
you take the time to listen, have made all the difference to me. I don’t have it all together yet. God is still working on me, and I’m praying
that one day I will be something worthy of all of your sweet words!
“Consider it pure joy, my brothers and
sisters, whenever you face trails of many kinds, because you know that the
testing of your faith produces perseverance.
Let perseverance finish its work so that you may be mature and complete,
not lacking anything.” James 1:2-4
Saturday, July 1, 2017
I am learning so many lessons from my children...
Often these days as I lay in bed listening for abnormal sounds
from Benjamin, I am flooded with thoughts about our children. There are times when I am sad for the reality
and harshness of life that they understand on a daily basis. They talk of seizures and tumors and cancer
as though they are commonplace and they have been trained on what to do in an
emergency (in the rare chance they are alone with Ben when he has a
seizure). These days they can frequently be heard having "seizures" as they are playing and describing them to other people who have not yet seen one in action.
Up until two summers ago I had tried to shelter them from the reality of life with cancer and seizures. Ben had only ever had seizures at night while in bed, so there was no reason for them to worry. Then while out on a walk with their dad at West Point one evening, Ben had a seizure and fell into the road. He and the twins were only about a quarter of a mile from home, but the strangers who stopped to help were very clear in the fact that my three years old understood more than I knew. They explained daddy had seizures and remained calm sitting on the side of the road with people they didn’t know while an ambulance came and loaded up daddy.
It must have felt like forever before I arrived to pick them up (and sadly I didn’t even get the names of the strangers who helped him in order to thank them properly later), but together the four of us drove to the hospital to meet the ambulance and check on daddy. After that night I began explaining to them more about seizures and what to do, but I also limited how often and how long I left them alone with daddy.
Up until two summers ago I had tried to shelter them from the reality of life with cancer and seizures. Ben had only ever had seizures at night while in bed, so there was no reason for them to worry. Then while out on a walk with their dad at West Point one evening, Ben had a seizure and fell into the road. He and the twins were only about a quarter of a mile from home, but the strangers who stopped to help were very clear in the fact that my three years old understood more than I knew. They explained daddy had seizures and remained calm sitting on the side of the road with people they didn’t know while an ambulance came and loaded up daddy.
It must have felt like forever before I arrived to pick them up (and sadly I didn’t even get the names of the strangers who helped him in order to thank them properly later), but together the four of us drove to the hospital to meet the ambulance and check on daddy. After that night I began explaining to them more about seizures and what to do, but I also limited how often and how long I left them alone with daddy.
Fast
forward to today, and all three of my children pray daily for daddy. They pray for his healing, that he wouldn't have any more seizures, and that God would cause all the tumors in his head to disappear (like a flash). Last month, in the midst of two almost back to
back partial seizures, I realized how much stronger they are then I am; and how much I can learn from them. In the midst of seizures, my children are
calm, resilient, trusting in the Lord, and have extreme faith. They lay hands on him and pray for the seizures to stop. They don't get stressed, instead calmly pray knowing God is in control.
They are learning so many things that at five and three years old they shouldn't have to learn, but at the same time they are teaching me so many things. I thank God daily that he uses them to teach me faith and hope and love (and patience, so much patience--after all, they are still normal 3 & 5 year olds😉). I wish I could shelter them from all the harsh realities of cancer and the pain that it has brought, but I also thank God that we have them to brighten our every day and to keep us from remembering all that is wrong in our world right now.
In November, they were ever so patient when we traveled to Texas and shared a hotel room for three weeks. When we left for Mexico in March, they wanted to know where we would be and what we would be doing. Whenever we would Skype they wanted to see and hear about what medicine and treatments daddy was doing. They wanted to know exactly how that was going to help him get better. We missed them every minute of the three weeks we were apart. Much of our days now are spent leaving them with sitters while we go from doctor to doctor or watching Netflix from the floor of daddy's doctor's appointments. They hang on to every word and will ask me about things when we leave there. They remind daddy of what he can and can't eat; and they tell him when his cancer is gone he can have sugar again ;-).
They are also quick to forgive and eager to love... They know he doesn't remember everything he tells them, and that he often forgets what he is doing. When he doesn't remember something they tell him the bugs in his head must have made him forget. When he forgets the words he is trying to say, they hug him and tell him it's okay. He isn't always nice and he frequently yells, but they love him anyways.
So often I find myself unable to trust that things will turn out well, and unable to remain calm in difficult situations. If only my faith were as strong as that of a child, who has no reason to doubt in the ability of the Lord to change the situation for the better. So often I find my feelings hurt by others and unable to forgive, let it go, and move on. My children wake up every day and have forgotten the hurt feelings of the past and are able to love, and enjoy every day to the fullest! My prayer is that I would be able to see the world we live in through their eyes so that I will have faith and strength to handle all that comes our way.
I still worry that we don't have enough time to spend with them and that they will not know how incredibly important and special they are to us, but I pray that even when we are not with them, that God's hand would be upon them and wherever they are! Most of all, I thank God daily for the joy that they have brought to our lives. They are one of the biggest reasons that I am able to try to choose joy every day!
In November, they were ever so patient when we traveled to Texas and shared a hotel room for three weeks. When we left for Mexico in March, they wanted to know where we would be and what we would be doing. Whenever we would Skype they wanted to see and hear about what medicine and treatments daddy was doing. They wanted to know exactly how that was going to help him get better. We missed them every minute of the three weeks we were apart. Much of our days now are spent leaving them with sitters while we go from doctor to doctor or watching Netflix from the floor of daddy's doctor's appointments. They hang on to every word and will ask me about things when we leave there. They remind daddy of what he can and can't eat; and they tell him when his cancer is gone he can have sugar again ;-).
They are also quick to forgive and eager to love... They know he doesn't remember everything he tells them, and that he often forgets what he is doing. When he doesn't remember something they tell him the bugs in his head must have made him forget. When he forgets the words he is trying to say, they hug him and tell him it's okay. He isn't always nice and he frequently yells, but they love him anyways.
So often I find myself unable to trust that things will turn out well, and unable to remain calm in difficult situations. If only my faith were as strong as that of a child, who has no reason to doubt in the ability of the Lord to change the situation for the better. So often I find my feelings hurt by others and unable to forgive, let it go, and move on. My children wake up every day and have forgotten the hurt feelings of the past and are able to love, and enjoy every day to the fullest! My prayer is that I would be able to see the world we live in through their eyes so that I will have faith and strength to handle all that comes our way.
I still worry that we don't have enough time to spend with them and that they will not know how incredibly important and special they are to us, but I pray that even when we are not with them, that God's hand would be upon them and wherever they are! Most of all, I thank God daily for the joy that they have brought to our lives. They are one of the biggest reasons that I am able to try to choose joy every day!
Sunday, June 25, 2017
So many of you help me to choose joy!
Many of you know that after a really rough 2016, I made it my goal to choose joy during 2017. It isn't always easy, but I have been so blessed by the number of people who have helped to remind me on rough days through texts, notes, or by tangible little reminders. Even my dad who isn't much of a texter/emailer has taken the time to send me sermons and messages about choosing joy! It has been such a blessing to have others reach out to me and encourage me to reach my goals!
If you have seem me out running or running errands the past few months, you have probably seen me wearing a choose joy shirt at some point in time too. I made myself a couple of them in various colors so that I could remind myself to choose joy on difficult days! It helps to have reminders of the things you want to remember in life. They can motivate you and encourage you at the times when you need it the most! I have joked that I wanted a giant sign to put across from the kitchen in my house so that I can see CHOOSE JOY when I am cleaning and doing dishes (while my kids trash the rest of the house); and a few weeks ago a sweet friend from Bible study showed up with a sign that works perfectly on that wall!
Another tangible reminder arrived the day before Mother's Day and my girls had a ballet recital. Ben had been seizure free for a longer period of time than usual, but I had still asked his mom to come along to sit with him since I was volunteering backstage. I got the girls ready for their performance and before I left the house with them, I found a box in the mailbox with the sweetest gift for me. Inside was a beautiful necklace I had seen in an Etsy shop months before and liked... it said simply, "Choose Joy," and had the sweetest note attached. I shed a few tears reading the note and decided I was going to wear that necklace right then!
I put it on and ran out the door to the recital. The recital was long and Ben, Josh, his mom and sister sat in the third row to watch. I was able to sneak in for the girls performance and then again for the grand finale. I happened to be standing in the aisle when I heard Ben start to seize and I jumped over the people sitting beside him to sit and take care of him! I put my arm around him in the seat and when I lowered my head to pray I saw that necklace and thanked God that Ben had made it through the performance before having a seizure (in the middle seat of the third row!). Instead of getting upset and crying, I chose to smile and be thankful for all the people who stepped up to help us get Ben out of the building and home. And again, I was thankful that his mom and sister were there to help with Ben and the kids. It seems God is always providing exactly what we need in his timing!
Ben had his mom stop to get the girls flowers on the way to the recital that night. He doesn't remember the flowers or the recital, but THEY DO! And those first flowers from their daddy brought them such joy that they are still talking about them!
I wear that necklace almost every day (even with my choose joy shirt) as a reminder that it's up to us to make the best of every situation that we are in! We have the choice to decide to make today a good day, or to let everything that goes wrong throw us off our goals! It doesn't have to be a perfect day, and sometimes every thing that can go wrong does; but that doesn't mean you have to let that steal your joy!
Smile on my friend, and thank you for helping me to smile too!
Do you have any goals this year that you need some encouragement in reaching? Are you interested in hearing more about my journey towards choosing joy? Do you want to cheer me on or allow me to cheer you? If so, I have created a facebook page to share that journey and I would love to have you join it!
https://www.facebook.com/choosingjoyineverymoment/
If you have seem me out running or running errands the past few months, you have probably seen me wearing a choose joy shirt at some point in time too. I made myself a couple of them in various colors so that I could remind myself to choose joy on difficult days! It helps to have reminders of the things you want to remember in life. They can motivate you and encourage you at the times when you need it the most! I have joked that I wanted a giant sign to put across from the kitchen in my house so that I can see CHOOSE JOY when I am cleaning and doing dishes (while my kids trash the rest of the house); and a few weeks ago a sweet friend from Bible study showed up with a sign that works perfectly on that wall!
Another tangible reminder arrived the day before Mother's Day and my girls had a ballet recital. Ben had been seizure free for a longer period of time than usual, but I had still asked his mom to come along to sit with him since I was volunteering backstage. I got the girls ready for their performance and before I left the house with them, I found a box in the mailbox with the sweetest gift for me. Inside was a beautiful necklace I had seen in an Etsy shop months before and liked... it said simply, "Choose Joy," and had the sweetest note attached. I shed a few tears reading the note and decided I was going to wear that necklace right then!
Ben had his mom stop to get the girls flowers on the way to the recital that night. He doesn't remember the flowers or the recital, but THEY DO! And those first flowers from their daddy brought them such joy that they are still talking about them!
I wear that necklace almost every day (even with my choose joy shirt) as a reminder that it's up to us to make the best of every situation that we are in! We have the choice to decide to make today a good day, or to let everything that goes wrong throw us off our goals! It doesn't have to be a perfect day, and sometimes every thing that can go wrong does; but that doesn't mean you have to let that steal your joy!
Smile on my friend, and thank you for helping me to smile too!
Do you have any goals this year that you need some encouragement in reaching? Are you interested in hearing more about my journey towards choosing joy? Do you want to cheer me on or allow me to cheer you? If so, I have created a facebook page to share that journey and I would love to have you join it!
https://www.facebook.com/choosingjoyineverymoment/
Tuesday, April 25, 2017
Finding Hope in Unexpected Places
We returned from Tijuana almost two weeks ago, full of hope and anticipation of the good things that were to come. Hope 4 Cancer was amazing, we loved the clinic, the staff, and were truly blessed by all the other patients and caregivers there. We were both excited to come home, but sad to leave that wonderful place behind.
The kids were excited to see us and I jumped back into work the morning after we returned. My semester working for GCU wraps up this week and then we will finally get back to some sense of normal around here.
Benjamin mentioned a few times last week that he was having trouble remembering things. This is something I have noticed for awhile, but he didn't see to be aware of it until now. It troubles him and we are hoping that it will pass as he gets used to life back at home again. Over the past month, we were able to lower one seizure medication and also the steroid dosage he is on. We started using frankincense oil (morning and night) and are hoping he will be able to lower the steroid some more. Long-term use of high dose steroids isn't recommended and the side effects are hard to handle.
Last Monday Benjamin had his bi-monthly MRI. We had the chance to see the scan on Monday, but we didn't get a chance to read the radiology report until Wednesday and on Thursday we met with his oncologist. According to the latest scan the tumors are continuing to grow. The largest is measuring at just under 5cm and there are multiple additional tumors throughout the brain, not just the surgical cavity from the previous surgeries. His oncologist outlined what he felt were our three options for treatment: 1) do nothing (which is still something since we are now following the H4C protocol); 2) continue Avastin (which may slow the growth of the tumors); or 3) do chemo (which he says would be ineffective at this point and radiation is not an option). The appointment with him was discouraging, but we know that we serve a God that does not deal in the timelines that doctor's set for us. Ben has chosen to continue with the Avastin in addition to the treatment plan he is on thru Hope 4 Cancer. We have high hopes that we will start to see the fruits of this treatment over the next few months.
The radiology report was discouraging for Benjamin, but I reminded him that regardless of the results, he had only had 1grand mal seizure in the course of 7 weeks; which is huge since we were averaging 1 a week for most of January/February. He had a wonderful afternoon with his mom and our kids and then proceeded to have two grand mal seizures that afternoon/evening. I think that the stress of hearing the MRI report was too much for him to think about. While the seizures have been less frequent; the past few have had a period of time afterwards when Ben is unable to communicate. It's hard for us to hear him trying to speak to us, and frustrating for him when he realizes we can't understand anything he is saying.
He has had a great week since then, and has had the opportunity to spend quality time with his brothers and sisters which does a lot for lifting his spirits. He even has taken a few minutes to play with the kids a couple of times this week. It is so encouraging to see him enjoying time with them. And answered prayer in that there have been no more seizures. We both continue to be confident that he will beat this and that God will continue to bless us!
We ask for your prayers for us in several areas:
1) For Benjamin's health and healing!
2) For our family to continue to have faith and strength in all things!
3) For Benjamin's memory, his mind has always been his greatest asset and it is hard for him to have trouble remembering things!
4) For our house in TN to sell, and soon (without us having to take a loss on it)!
5) For me to be able to work through the pile of paperwork involved with being reimbursed for the move and his medical expenses... I'm making progress finally, but it is hard when he can not help steer me in the right direction.
6) For us to continue to find and choose joy in all things!
Thanks for your prayers and friendship!
The kids were excited to see us and I jumped back into work the morning after we returned. My semester working for GCU wraps up this week and then we will finally get back to some sense of normal around here.
Benjamin mentioned a few times last week that he was having trouble remembering things. This is something I have noticed for awhile, but he didn't see to be aware of it until now. It troubles him and we are hoping that it will pass as he gets used to life back at home again. Over the past month, we were able to lower one seizure medication and also the steroid dosage he is on. We started using frankincense oil (morning and night) and are hoping he will be able to lower the steroid some more. Long-term use of high dose steroids isn't recommended and the side effects are hard to handle.
Last Monday Benjamin had his bi-monthly MRI. We had the chance to see the scan on Monday, but we didn't get a chance to read the radiology report until Wednesday and on Thursday we met with his oncologist. According to the latest scan the tumors are continuing to grow. The largest is measuring at just under 5cm and there are multiple additional tumors throughout the brain, not just the surgical cavity from the previous surgeries. His oncologist outlined what he felt were our three options for treatment: 1) do nothing (which is still something since we are now following the H4C protocol); 2) continue Avastin (which may slow the growth of the tumors); or 3) do chemo (which he says would be ineffective at this point and radiation is not an option). The appointment with him was discouraging, but we know that we serve a God that does not deal in the timelines that doctor's set for us. Ben has chosen to continue with the Avastin in addition to the treatment plan he is on thru Hope 4 Cancer. We have high hopes that we will start to see the fruits of this treatment over the next few months.
The radiology report was discouraging for Benjamin, but I reminded him that regardless of the results, he had only had 1grand mal seizure in the course of 7 weeks; which is huge since we were averaging 1 a week for most of January/February. He had a wonderful afternoon with his mom and our kids and then proceeded to have two grand mal seizures that afternoon/evening. I think that the stress of hearing the MRI report was too much for him to think about. While the seizures have been less frequent; the past few have had a period of time afterwards when Ben is unable to communicate. It's hard for us to hear him trying to speak to us, and frustrating for him when he realizes we can't understand anything he is saying.
He has had a great week since then, and has had the opportunity to spend quality time with his brothers and sisters which does a lot for lifting his spirits. He even has taken a few minutes to play with the kids a couple of times this week. It is so encouraging to see him enjoying time with them. And answered prayer in that there have been no more seizures. We both continue to be confident that he will beat this and that God will continue to bless us!
We ask for your prayers for us in several areas:
1) For Benjamin's health and healing!
2) For our family to continue to have faith and strength in all things!
3) For Benjamin's memory, his mind has always been his greatest asset and it is hard for him to have trouble remembering things!
4) For our house in TN to sell, and soon (without us having to take a loss on it)!
5) For me to be able to work through the pile of paperwork involved with being reimbursed for the move and his medical expenses... I'm making progress finally, but it is hard when he can not help steer me in the right direction.
6) For us to continue to find and choose joy in all things!
Thanks for your prayers and friendship!
Thursday, March 30, 2017
Hope4Cancer Tijuana, Mexico- Week 1
Yesterday marks one week since we flew to San Diego and traveled across the border to the clinic in Mexico. We had a little bit of a rough start, but things seem to be going smoothly now! Benjamin had numerous tests run over the first two days and by the first full day in the clinic started on all of his treatments. Because he had a grand mal seizure after a heat treatment that day, we have adjusted the treatments he is doing, but he continues on everything else!
I thought I would share a little about what each day looks like and the things that he is involved in doing here! For the most part this is what our day looks like:
7am- We get up and head downstairs for him to drink his lemon water, golden milk (turmeric milk) and hibiscus juice.
8am- We head off to breakfast. The meals are incredible here. Breakfast usually consists of some type of eggs and vegetables as well as porridge or oatmeal with fruit mixed in.
After breakfast he does his PEMF treatment- this is a pulsed electro magnetic treatment that he does 3 times for 3 minutes at a time. He holds a paddle to his forehead over the tumor and short pulses go through him.
9am- He goes into the hyperbaric oxygen chamber for 50-60min. He typically naps during this treatment and his only complaint is that his ears pop as it starts. I sit outside the room during this one since he is sealed into a capsule and I check every few minutes to make sure all is well. Sometimes the nurse will sit at his feet so that she can tell if there is any movement so that I can run and get a shower for a few minutes!
10am- We stop by the juice bar for his first juice of the day. Then we typically head back to our room and our nurse will hook him up for one of his two daily IVs. He gets PolyMVA (1 hour) daily, and alternates between Vitamin C (3 hour) and B-17 (1 hour). He will either nap or watch television for a bit while laying on the bed. Around 11am I will run downstairs and get his morning protein shake/smoothie for him. Twice a week he also does UVBI (involves taking blood and adding oxygen to it before putting it back).
1pm- Lunch! We are usually both hungry by the time meals roll around so we get there right when the dining hall opens. Lunch and dinner typically start with a soup and a salad. At lunch, they often serve fish as well as some other veggies and rice or quinoa.
2pm- After lunch Ben will head to the sauna for about a half an hour. We are hoping that he will be able to start alternating this with whole body hyperthermia at some point again as long as he continues doing well.
3pm- His second round of juice of the day from the juice bar and then he starts his second IV of the day and frequently takes a nap in our room while he is getting it.
4pm- I run down and grab his smoothie/shake from the juice bar. If we have a few minutes we may walk a couple of blocks to get out in the sunshine before dinner.
5:30- Dinner. This is another meal with lots of fruits and veggies, no meat, and usually no fish at this time either. We both typically ask for more of whatever we liked during this meal to help us last the night since there is no snacking!
6:30pm- After dinner Ben does his coffee enema. We schedule this right before his evening dose of pills to make sure that his detoxing doesn't knock them out of his system.
Twice a week at 7pm there is a prayer/worship service that we have enjoyed going to!
8pm- We typically are back in our room for him to take his evening pills and head to bed... he is enjoying catching up on Netflix, but we are both ready for sleep by 9pm.
Mixed in throughout the day are doctors appointments. Typically his doctor will find him wherever he is and check in for a few minutes once or twice a day. He has several 1-2 hour sessions with a doctor trained in recall therapy as well who is helping him trace his family history and events from his past that may have helped contribute to his current health. This is fascinating to me and I have learned so much from it! In addition, he will be having a consultation with a biological dentist. Root canals, gum disease and many other dental related items can contribute to sickness and illness so we are excited to learn what they have to say.
He will continue with these treatments and a few others over the next weeks until about 3-4 days before we leave for home. At that point he will be receiving Rigvir. He will still receive his IVs during the three days he receives rigvir but he wont be doing the intensive detox. We are hoping that we will have a little extra time those days to get out and see a little bit of Tijuana.
Here is a view of the beach... we can cross the street in front of the clinic to take a few steps down to the boardwalk. We have done that twice and have enjoyed the fresh air!
We have been blessed by the amazing staff, doctors, and the other patients here. The clinic is nothing beautiful, but the people have been wonderful and we are enjoying getting to know people from all over the world. I wish I could say my Spanish is improving, but alas... it is not!
I thought I would share a little about what each day looks like and the things that he is involved in doing here! For the most part this is what our day looks like:
7am- We get up and head downstairs for him to drink his lemon water, golden milk (turmeric milk) and hibiscus juice.
8am- We head off to breakfast. The meals are incredible here. Breakfast usually consists of some type of eggs and vegetables as well as porridge or oatmeal with fruit mixed in.
After breakfast he does his PEMF treatment- this is a pulsed electro magnetic treatment that he does 3 times for 3 minutes at a time. He holds a paddle to his forehead over the tumor and short pulses go through him.
9am- He goes into the hyperbaric oxygen chamber for 50-60min. He typically naps during this treatment and his only complaint is that his ears pop as it starts. I sit outside the room during this one since he is sealed into a capsule and I check every few minutes to make sure all is well. Sometimes the nurse will sit at his feet so that she can tell if there is any movement so that I can run and get a shower for a few minutes!
10am- We stop by the juice bar for his first juice of the day. Then we typically head back to our room and our nurse will hook him up for one of his two daily IVs. He gets PolyMVA (1 hour) daily, and alternates between Vitamin C (3 hour) and B-17 (1 hour). He will either nap or watch television for a bit while laying on the bed. Around 11am I will run downstairs and get his morning protein shake/smoothie for him. Twice a week he also does UVBI (involves taking blood and adding oxygen to it before putting it back).
1pm- Lunch! We are usually both hungry by the time meals roll around so we get there right when the dining hall opens. Lunch and dinner typically start with a soup and a salad. At lunch, they often serve fish as well as some other veggies and rice or quinoa.
2pm- After lunch Ben will head to the sauna for about a half an hour. We are hoping that he will be able to start alternating this with whole body hyperthermia at some point again as long as he continues doing well.
3pm- His second round of juice of the day from the juice bar and then he starts his second IV of the day and frequently takes a nap in our room while he is getting it.
4pm- I run down and grab his smoothie/shake from the juice bar. If we have a few minutes we may walk a couple of blocks to get out in the sunshine before dinner.
5:30- Dinner. This is another meal with lots of fruits and veggies, no meat, and usually no fish at this time either. We both typically ask for more of whatever we liked during this meal to help us last the night since there is no snacking!
6:30pm- After dinner Ben does his coffee enema. We schedule this right before his evening dose of pills to make sure that his detoxing doesn't knock them out of his system.
Twice a week at 7pm there is a prayer/worship service that we have enjoyed going to!
8pm- We typically are back in our room for him to take his evening pills and head to bed... he is enjoying catching up on Netflix, but we are both ready for sleep by 9pm.
Mixed in throughout the day are doctors appointments. Typically his doctor will find him wherever he is and check in for a few minutes once or twice a day. He has several 1-2 hour sessions with a doctor trained in recall therapy as well who is helping him trace his family history and events from his past that may have helped contribute to his current health. This is fascinating to me and I have learned so much from it! In addition, he will be having a consultation with a biological dentist. Root canals, gum disease and many other dental related items can contribute to sickness and illness so we are excited to learn what they have to say.
He will continue with these treatments and a few others over the next weeks until about 3-4 days before we leave for home. At that point he will be receiving Rigvir. He will still receive his IVs during the three days he receives rigvir but he wont be doing the intensive detox. We are hoping that we will have a little extra time those days to get out and see a little bit of Tijuana.
Here is a view of the beach... we can cross the street in front of the clinic to take a few steps down to the boardwalk. We have done that twice and have enjoyed the fresh air!
We have been blessed by the amazing staff, doctors, and the other patients here. The clinic is nothing beautiful, but the people have been wonderful and we are enjoying getting to know people from all over the world. I wish I could say my Spanish is improving, but alas... it is not!
Monday, March 13, 2017
Where are we going from here?
The last few weeks have had some ups and downs. After a series of seizures a couple of weeks
ago, the doctors doubled the daily steroids he was on in order to try to control the swelling in his brain (that was evident after the last MRIs). Shortly afterwards, Benjamin started having trouble with balance and walking. His vision was affected and when we went to
church three weeks ago he was not even able to get out of the car without
help. We found out his seizure drugs
were at toxic levels in his system so they upped one medication and took him
off the other for a weekend to make his levels drop. We added the meds back in slowly the
following week which encouraged a couple more seizures to get thrown into the
mix. I am happy to report that Ben has
not had any seizures since last Sunday!
Not even the focal (partial) seizures. Praise God! He is on a little
lower dose of one medication then before and it seems to be working for him!
The medications that he is on through the Texas clinic
continue to be holding tumor growth at bay and his last MRI said that there may
be slight decrease in size as well. The
doctor recommended Benjamin get a PET scan to see if the tumor is still active
and if it is not, to continue on the current treatment for the next eight
months. We have been trying to schedule a
PET Scan and also, praying about whether this is the best choice for continued
treatment as it becomes increasingly harder for us to come up with the money to
pay for each month’s treatment.
In February we also found out that our doctor in Texas would
be going in front of the Texas Medical Board on a list of charges. The clinic was unsure whether they would be
able to remain open after the trial the first week of March. Because we could not afford to pay for
medication in advance, we were unsure of whether we would be able to continue
on the treatment plan that we have established there. We started looking at a few other options and
came upon the Hope 4 Cancer clinic in Mexico.
We prayed about whether to go there and started talking to the
admissions staff to see if it was the right fit for us. Ben and I both (and his
mom who helps us with decision making these days) felt that a diet and
lifestyle overhaul would be a good choice for us at this point. When we realized the seizure meds he was on
were pushing him to a toxic level, it helped us to realize that a few weeks of detox
would help him to start fresh with treatment and hopefully help produce more of
the results we are praying for. The fees
for the treatment at the clinic in Mexico include a year of treatment and two
follow up visits after this initial trip.
If this proves to be enough treatment for Benjamin long-term, it will
relieve a lot of the financial burden we are currently under (which is what
Benjamin is most concerned about at this point). If
the treatment does not prove to be enough on its own, it will work well in
conjunction with the treatment that we are currently on through the Texas clinic and we will go from
there.
The clinic would have been able to fit us in earlier this month, but Benjamin and I both felt taking a few extra days to pray about it (and get passports) was the right way to go at that point. The more we discussed and prayed about it, the more we felt that that was the path we needed to head down next. That said, Benjamin and I leave next Wednesday for three
weeks at the clinic in Mexico. My mom
will be coming to stay with our children while we are gone and we are praying
that that will be uneventful. Please pray for me as well… I have never left the
children for this long and while I know they will be in good hands, I am
struggling with the decision to leave them for so long. I will miss them so much! I am so grateful that my mom will be coming to stay with them and provide the stability that they need while we are away.
Our praises:
*The clinic in Texas won at trial and will remain open
should we have the finances to continue treatment there.*Benjamin has been in much better spirits the past two weeks and has been able to spend quality time with the kids and I. He is sleeping less and feeling better.
Our prayer requests:
*That Benjamin will fare well on the new treatment. That the doctors will know the best course of
action for his future treatment and that he will be miraculously healed.*That our travel to Tijuana will be smooth and uneventful.
*That our house in Tennessee will finally sell and free up some funds for us to use to pay for continued treatment.
*That our children (and I) will handle the separation well and that we will be able to make up for lost time when we return. I miss them already.
*For Benjamin to find something meaningful to fill his days. He doesn’t admit it often, but he is lonely and often goes days without seeing or talking to anyone other than the kids and I. Any stay at home mom knows that is a hard place to be ;-)
Friday, February 17, 2017
February's MRI...
After the three partial seizures last week, Benjamin had a pretty uneventful weekend. On Monday, an accident broke his infusion pump so we had to resort to giving him his infusions by manually every four hours. It was a tiring night and first thing on Valentine's day we called to have a new pump sent to us. I left for work around 8 and mom texted to tell me that Ben had had another partial seizure. By the time I got home he was fine and we went out for a lunch date!
Tuesday evening as we were getting ready for bed, Ben had another partial seizure while standing in our room. It only lasted about 30 seconds and he picked up finishing our conversation as soon as he came out of it. Not even thirty minutes later I was laying in bed and heard him start to have a seizure while coming out of the bathroom. This time he had a full, grand mal seizure. He fell on the tile floor and hit his head on the tub. When he finished seizing, mom came upstairs and helped me get him up off the floor and back to bed. We had difficulty helping him stand up and walk. He tried to talk to us, but was not able to make his words make sense. I could tell he was in pain, but had no way to find out where he was hurting with him not able to communicate, so I just tried to get him settled to sleep. It was a fitful night for both of us, but by morning he was able to speak clearly and explain where he hurt. I had suspected he had a broken nose, but it was no longer bothering him. As is typical of the seizures he has had since last summer, he was left with his right shoulder in a lot of pain and limited use of that arm. His left knee was incredibly swollen so he was not able to walk. The left side of his face has an awesome black eye. My mom went and got him a wrap for his knee and some crutches and he has gotten around a little better each day since, thank goodness!
We called Texas and they said to take him off the infusions for 24 hours; the oncologist at the VA cancelled his Avastin treatment for Thursday and scheduled him for an emergency MRI; and the neurologist scheduled him for a blood draw to check his medication levels.
The update:
*Benjamin is gaining more strength in his arm and leg and has not had any seizures since Tuesday night. As of last night he is back on his new infusion pump with no issues.
*The MRI results came back as no major change since the previous scan. They are not attributing the seizures to tumor growth, but possible tumor hemorrhage or irritation in the surrounding area of the brain. They increased his steroid dose to reduce the swelling there, which will also hopefully reduce the amount of future seizures.
*His medication levels are now at a therapeutic level. The doctor is hoping that this will hold the big seizures at bay. As long as the tumors remain, he is not sure if they will be able to stop the partial seizures, but he is going to continue monitoring his levels. Ben is on over a maximum dose of both of his seizure meds after the three consecutive increases in the past two weeks, so the neurologist needs to figure out whether his levels are being lowered by interactions with his other medications!
Prayer Requests:
*Please pray for no more seizures for Benjamin.
*Pray that the tumor hemorrhage and swelling is from tumor breakdown, that is what we are believing!
*Pray for wisdom for us to know what to do next as far as treatment goes.
*Pray that the seizures will not keep the VA from continuing to do his future Avastin treatments.
I am so thankful that my mom was here with us this week and was able to help for us to do a lot of last minute running around to appointments. Ben's brother Dan dropped everything to run out and lower our 3 foot high bed so that I wouldn't have to lift Ben into anymore (I might miss that workout); and his mom stopped by to stay with them so that my mom would have help while I worked. We are so thankful to have the help and support of our families! As always, we appreciate the prayers of our friends! Thank you all for your sweet words and your generous donations; I may not have time to respond to each one of you, but I am truly humbled by your love and support!
Tuesday evening as we were getting ready for bed, Ben had another partial seizure while standing in our room. It only lasted about 30 seconds and he picked up finishing our conversation as soon as he came out of it. Not even thirty minutes later I was laying in bed and heard him start to have a seizure while coming out of the bathroom. This time he had a full, grand mal seizure. He fell on the tile floor and hit his head on the tub. When he finished seizing, mom came upstairs and helped me get him up off the floor and back to bed. We had difficulty helping him stand up and walk. He tried to talk to us, but was not able to make his words make sense. I could tell he was in pain, but had no way to find out where he was hurting with him not able to communicate, so I just tried to get him settled to sleep. It was a fitful night for both of us, but by morning he was able to speak clearly and explain where he hurt. I had suspected he had a broken nose, but it was no longer bothering him. As is typical of the seizures he has had since last summer, he was left with his right shoulder in a lot of pain and limited use of that arm. His left knee was incredibly swollen so he was not able to walk. The left side of his face has an awesome black eye. My mom went and got him a wrap for his knee and some crutches and he has gotten around a little better each day since, thank goodness!
We called Texas and they said to take him off the infusions for 24 hours; the oncologist at the VA cancelled his Avastin treatment for Thursday and scheduled him for an emergency MRI; and the neurologist scheduled him for a blood draw to check his medication levels.
The update:
*Benjamin is gaining more strength in his arm and leg and has not had any seizures since Tuesday night. As of last night he is back on his new infusion pump with no issues.
*The MRI results came back as no major change since the previous scan. They are not attributing the seizures to tumor growth, but possible tumor hemorrhage or irritation in the surrounding area of the brain. They increased his steroid dose to reduce the swelling there, which will also hopefully reduce the amount of future seizures.
*His medication levels are now at a therapeutic level. The doctor is hoping that this will hold the big seizures at bay. As long as the tumors remain, he is not sure if they will be able to stop the partial seizures, but he is going to continue monitoring his levels. Ben is on over a maximum dose of both of his seizure meds after the three consecutive increases in the past two weeks, so the neurologist needs to figure out whether his levels are being lowered by interactions with his other medications!
Prayer Requests:
*Please pray for no more seizures for Benjamin.
*Pray that the tumor hemorrhage and swelling is from tumor breakdown, that is what we are believing!
*Pray for wisdom for us to know what to do next as far as treatment goes.
*Pray that the seizures will not keep the VA from continuing to do his future Avastin treatments.
I am so thankful that my mom was here with us this week and was able to help for us to do a lot of last minute running around to appointments. Ben's brother Dan dropped everything to run out and lower our 3 foot high bed so that I wouldn't have to lift Ben into anymore (I might miss that workout); and his mom stopped by to stay with them so that my mom would have help while I worked. We are so thankful to have the help and support of our families! As always, we appreciate the prayers of our friends! Thank you all for your sweet words and your generous donations; I may not have time to respond to each one of you, but I am truly humbled by your love and support!
Thursday, January 19, 2017
Choosing Joy for 2017
2016 consisted of a lot of moving, changing, and stressing for me (and our family), and in December I made the decision to make 2017 a year of joy. In all things, I am going to try to choose joy! The days are not always easy, but in all things I am trying to see the blessing... the kids got a stomach bug (but I didn't, so choose joy); we had to pay a lot of medical expenses unplanned (but received a generous gift, so choose joy-- and praise GOD!). I have lost so much time in being disappointed that things are not going the way that I want them to, and that is time I can't ever get back! I don't want to waste precious time this year. I want to enjoy every moment with the people that I love (with a smile). I don't always remember, but when we miss an appointment or things don't run on time, I am trying to smile and just enjoy the waiting. There are so many things I can't control and stressing about the things I can is more than enough to keep me busy these days!
Plus I have so many praises to report:
Benjamin is more like his old self every day, he has more energy, more motivation, and is beginning to look more like himself! This brings me sooo much joy! He is taking time to spend with the kids and they are enjoying the time that they have spent building and doing things with him! I have even left him home alone with the kids for a few short periods of time while I have run errands. They know what to do in an emergency and he handled them the way that he would have watched them a year ago ;-)
Benjamin's 2nd MRI since starting treatment once again shows no growth and some reduction in size of the largest tumor. We are excited to report no growth since he started on this treatment.
One part of Ben's current treatment has been having Avastin infusions every two weeks. This is not considered standard of care because it is typically used after chemo and radiation have failed, which Ben has not done. It halts the growth of the tumors and allows some of the other medications he is on to continue working. We have met with a dozen oncologists since leaving Texas in November and everyone who is willing to order this medication has not taken our insurance. The drug company is great about helping with patients who have financial need IF your insurance will not pay for it, but since our insurance will, we have been forced to try to find an oncologist who will order it AND take our insurance. In the meantime, we have had to make trips to Texas where we paid $15k for it out of pocket each time. We have been seen at the local military hospital and by the oncologists at the VA multiple times and have been told repeatedly that this is not standard of care and not a good use of their funds. They finally submitted our case to their ethics board and we found out today that they are willing to start doing his future infusions!!! PRAISE GOD!!! This will save us over $30k a month and the numerous trips to Texas! Not to mention the multiple weekly appts trying to find a doctor to treat Benjamin here in Ohio! Our whole family could use a break from that ;-)
We have also been blessed by the numerous notes and donations that we have received. We would not have made it this far without our friends and family. Now that we will not need to pay for Avastin, we almost have enough money for two more months of treatment in Texas. God has provided for everything we have needed, in HIS timing!
I do have a few requests for prayer:
1. We would love our house in Clarksville to sell and for a good price. It would be a blessing to not have to continue to pay for it while it sits empty!
2. We also ask for continued prayer for Benjamin to handle treatment well and start to see miraculous results on his MRIs.
3. We ask for prayer for the doctor we have seen in Texas. Guidance for him and the staff that works with him. While not everyone agrees, we feel he is doing a good work and have personally met dozens of people who have seen miraculous healing by his unique protocols.
4. That should we decide to go in a different direction, whether because of finances or necessity, that God would lead us down the right path!
Thank you all again for your love & prayers! And remember, in all things CHOOSE JOY!!! Just trust and believe, because all thing are working together in HIS timing!
Plus I have so many praises to report:
Benjamin is more like his old self every day, he has more energy, more motivation, and is beginning to look more like himself! This brings me sooo much joy! He is taking time to spend with the kids and they are enjoying the time that they have spent building and doing things with him! I have even left him home alone with the kids for a few short periods of time while I have run errands. They know what to do in an emergency and he handled them the way that he would have watched them a year ago ;-)
Benjamin's 2nd MRI since starting treatment once again shows no growth and some reduction in size of the largest tumor. We are excited to report no growth since he started on this treatment.
One part of Ben's current treatment has been having Avastin infusions every two weeks. This is not considered standard of care because it is typically used after chemo and radiation have failed, which Ben has not done. It halts the growth of the tumors and allows some of the other medications he is on to continue working. We have met with a dozen oncologists since leaving Texas in November and everyone who is willing to order this medication has not taken our insurance. The drug company is great about helping with patients who have financial need IF your insurance will not pay for it, but since our insurance will, we have been forced to try to find an oncologist who will order it AND take our insurance. In the meantime, we have had to make trips to Texas where we paid $15k for it out of pocket each time. We have been seen at the local military hospital and by the oncologists at the VA multiple times and have been told repeatedly that this is not standard of care and not a good use of their funds. They finally submitted our case to their ethics board and we found out today that they are willing to start doing his future infusions!!! PRAISE GOD!!! This will save us over $30k a month and the numerous trips to Texas! Not to mention the multiple weekly appts trying to find a doctor to treat Benjamin here in Ohio! Our whole family could use a break from that ;-)
We have also been blessed by the numerous notes and donations that we have received. We would not have made it this far without our friends and family. Now that we will not need to pay for Avastin, we almost have enough money for two more months of treatment in Texas. God has provided for everything we have needed, in HIS timing!
I do have a few requests for prayer:
1. We would love our house in Clarksville to sell and for a good price. It would be a blessing to not have to continue to pay for it while it sits empty!
2. We also ask for continued prayer for Benjamin to handle treatment well and start to see miraculous results on his MRIs.
3. We ask for prayer for the doctor we have seen in Texas. Guidance for him and the staff that works with him. While not everyone agrees, we feel he is doing a good work and have personally met dozens of people who have seen miraculous healing by his unique protocols.
4. That should we decide to go in a different direction, whether because of finances or necessity, that God would lead us down the right path!
Thank you all again for your love & prayers! And remember, in all things CHOOSE JOY!!! Just trust and believe, because all thing are working together in HIS timing!
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