I want to begin with a sincere apology for not doing a better job of staying in touch with all of you. When this website was created by a family member, we had every intention of using the blog to post a daily update of John's journey through his cancer treatment. Our lives just became so busy and with so many of you following on Facebook we ended up communicating there instead. We can not begin to thank you enough for all of your caring support you have shown our family through this difficult and emotional time. Your generous donations, thoughtful wishes and most of all your prayers were truly appreciated! We felt surrounded with support every step of the way.
I need to share with you the best part of this update...JOHN IS IN REMISSION!!!
Last year as you know we were devastated to learn that John could not be scheduled for a transplant until the funds were paid up front in full for $311,000.00, of which only $250,000.00 was covered by our insurance. At the time this was so overwhelming but with your help we raised enough money to pay for all of the expenses not covered. John and I left our home in June and lived in Seattle for almost four months. He did amazing and tolerated a very intense treatment of chemotherapy. John had his stem cell transplant on August 23rd and I was able to bring him home at the end of September. He has continued to receive follow up care with his oncologist here and recently had a series of test done including another bone marrow sample to re-stage the cancer. We learned that for now John's cancer is in remission. This news came with so many blessings. We have been given the gift of life and more time! We know that each day together is a gift and we now cherish all the little things that we have learned actually matter the most. The sound of laughter in the giggles from our daughters, making time to get together more often with our family and friends, no longer putting off things for a more convenient time and most of all making as many memories as we can squeeze in. John has returned to full duty as a firefighter and feels great!
Thanks to your support, medical technology, a brilliant team of doctors, lots of prayer and God's grace, John is here...alive today with a VERY hopeful tomorrow! I watch him trying to live each day to its fullest and teaching his daughters valuable lessons now for the time when he is no longer here. Reality is that Multiple Myeloma is a terminal cancer so we know that it will come back someday. We will be ready and stronger than before to fight it again when that day comes. John still has more stem cells frozen and ready for the next transplant. When those are gone he has two brothers that are a perfect match to his bone marrow. With every day comes new research, fewer fatality rates from treatment and maybe even a cure! With every day comes a chance for another miracle. John is a fighter and he knows that he has more life in him to live, more dreams to see come true and needs more time to be here for his family. We all should live like we are dying and make the most of every day! None of us know that when we hug the ones we love, it could be for the last time.
Thank you again for being a special part of saving John's life and giving him more time. We are contemplating shutting down the website since most of you have been following John's journey through Facebook. If you are not already, please become his friend at Save John Knighten.
We have been so blessed and plan to make the most of it. John... a husband, father, Marine, Fire Fighter and now a an example to all of us to never give up and keep fighting.
With love and thanks, the Knighten Family
Saturday, February 26, 2011
KXLY Does Follow Up On The Knighten's
KXLY ran a follow up story on the Knighten's and their journey. We'd like to thank KXLY for bringing attention to the story and helping us achieve this goal for John's treatment. Click the link below for the full post:
http://www.kxly.com/news/25184358/detail.html
http://www.kxly.com/news/25184358/detail.html
Looking Back...
It has been almost a week since I brought John home. I can not tell you how happy he is to be in the comforts of our own home with his girls again. Looking back on our journey brings back many emotions.
I was told in January that my husband had a terminal cancer and most patients only live an average of three years. John started chemotherapy the next month and we were urged to consider a stem cell transplant to prolong his life. We had so much to consider. This procedure came with many possible complications and is extremely expensive. We traveled to Seattle to meet with the transplant team for a consultation. We were told that John was a very good candidate for a stem cell transplant and given his age and otherwise good health, he could endure the harsh treatment they would need to put him through to help him. We were given a large fundraiser packet with many suggestions but assumed we would be fine since we had good insurance through the Fire Department. As John began treatment to prepare his body for the transplant our family was going through so many emotional struggles. It is very difficult to not let your mind be consumed with fear as I worried for our future together and scared of the many memories he might not be a part of. Then I received a call that made everything come crashing down. Seattle was not able to schedule John for his transplant until the funds were secured upfront for the $311,000.00 of which our insurance would only pay $250,000.00. I was told that we needed to come up with $61,000.00 in just a few months. It was so sad to me that there was a life saving procedure available but only if you have enough money. We had good insurance and if our plan did not cover this, then many others were in the same situation. Once again I turned to prayer, for guidance. The next day my sister in law approached me with an idea. She had taught herself to set up a website and asked me if she could do something to help. I knew John would NEVER agree to this, he would not ask for help. I saw a man who time after time risked his life to save others and now needed his own life saved. I made a decision to let her set up a website for John and would ask him to forgive me later. Save John Knighten was created out of hope that with help I could find a way to save his life. I knew this problem was bigger than us and everyone kept asking how they could help. The generous donations started coming in so fast. Family, friends, co-workers and total strangers. So many thoughtful people sent well wishes and their prayers. Family and friends began planning a variety of fundraisers, working so hard to help in our fight. We were surrounded by caring support. It was a very humbling experience and we felt so blessed. We truly could not believe how our story touched so many lives. A seven year old boy named Jake saw us on the news and said, that is Kasey's daddy. He wanted to give Mr. Knighten the money from his piggy bank to help. His mother was so touched that she told him she would match what ever he gave. This child went on his own personal fund raising and came to our home with a Ziploc bag that had over $500 in it. I was overwhelmed with tears as I saw how one little boy set on making a difference was just one example of grace in our lives.
I set out with a goal but never dreamed we would actually raise enough money in time. Continued...
I was told in January that my husband had a terminal cancer and most patients only live an average of three years. John started chemotherapy the next month and we were urged to consider a stem cell transplant to prolong his life. We had so much to consider. This procedure came with many possible complications and is extremely expensive. We traveled to Seattle to meet with the transplant team for a consultation. We were told that John was a very good candidate for a stem cell transplant and given his age and otherwise good health, he could endure the harsh treatment they would need to put him through to help him. We were given a large fundraiser packet with many suggestions but assumed we would be fine since we had good insurance through the Fire Department. As John began treatment to prepare his body for the transplant our family was going through so many emotional struggles. It is very difficult to not let your mind be consumed with fear as I worried for our future together and scared of the many memories he might not be a part of. Then I received a call that made everything come crashing down. Seattle was not able to schedule John for his transplant until the funds were secured upfront for the $311,000.00 of which our insurance would only pay $250,000.00. I was told that we needed to come up with $61,000.00 in just a few months. It was so sad to me that there was a life saving procedure available but only if you have enough money. We had good insurance and if our plan did not cover this, then many others were in the same situation. Once again I turned to prayer, for guidance. The next day my sister in law approached me with an idea. She had taught herself to set up a website and asked me if she could do something to help. I knew John would NEVER agree to this, he would not ask for help. I saw a man who time after time risked his life to save others and now needed his own life saved. I made a decision to let her set up a website for John and would ask him to forgive me later. Save John Knighten was created out of hope that with help I could find a way to save his life. I knew this problem was bigger than us and everyone kept asking how they could help. The generous donations started coming in so fast. Family, friends, co-workers and total strangers. So many thoughtful people sent well wishes and their prayers. Family and friends began planning a variety of fundraisers, working so hard to help in our fight. We were surrounded by caring support. It was a very humbling experience and we felt so blessed. We truly could not believe how our story touched so many lives. A seven year old boy named Jake saw us on the news and said, that is Kasey's daddy. He wanted to give Mr. Knighten the money from his piggy bank to help. His mother was so touched that she told him she would match what ever he gave. This child went on his own personal fund raising and came to our home with a Ziploc bag that had over $500 in it. I was overwhelmed with tears as I saw how one little boy set on making a difference was just one example of grace in our lives.
I set out with a goal but never dreamed we would actually raise enough money in time. Continued...
Our Story From The Beginning......
Many of you have asked questions on what led up to John being diagnosed with cancer. I'm sorry that it has taken awhile to post, but it was very difficult to write. As the words flowed, so did the tears. I remember the raw fear of knowing my husband was going to die and I began then grieving for him, myself and our girls. Here is our story.....
I ended 2009 with my annual holiday letter to family and friends, sharing that it had been a difficult year for the Knighten family. I had a major surgery, we had some home disasters that resulted in expensive repair costs but the worst, John had been very sick battling some serious infections like three rounds of pneumonia. I maintained my positive attitude that 2010 was going to be better! As the clock struck midnight I watched my little girls cheer with delight and a lot of noise from banging on pots. John was lying down because he said he just didn't feel very good.
On January 1st my husband kissed me goodbye as he left for the fire station and stated that he had a really bad sore throat. I asked him to just stay home since, in his almost 16 years with the fire dept, he has only called in sick three times. He truly loves his job and has a very strong work ethic! It was also holiday pay which he felt we needed to recover the expense of the septic tank nightmare a week prior. I had no idea how his stubbornness would end up saving his life. At about 3:30 am John was awake pacing, afraid to wake up his fellow co-workers but at 4:30am he knew something was very wrong and was having a hard time breathing. As the firefighters and medics checked his vitals, they knew that John's airway was closing and rushed him to the ER.
Doctors later told me that the quick response of the firefighters and medics saved my husbands life. It was almost 5am on January 2nd when I received a call that my husband was in critical condition and the doctor was rushing John into the operating room to see if he could put in a breathing tube. They had him prepped for a full tracheotomy but were able to establish an airway through a microscopic opening that was left. John was intubated with a breathing tube of the size used on infants.
When I arrived at the hospital, it was like a scene from a movie where firefighters lined the hallway not leaving John until they knew everything was going to be ok. The emotional support was very touching. I was able to tell John how much I loved him before they quickly sedated him so he could rest. I soon learned that John had Strep Pneumoniae Sepsis with acute, severe Epiglottitis which to us non doctors was a very serious infection in his throat. This was extremely rare for an adult. We also learned that John had very significant anemia. As I cried holding my husband's hand so many emotions were running through me. I really did not know if he was going to live. I prayed for the Lord's grace and for John's healing.
I started questioning all of the medical history and knew with everything in me that we were missing something. This was a very healthy guy who in the past year continued to get one infection after another. I don't have a PhD after my name, but I knew SOMETHING was not working right with his immune system. As I urged several medical staff to listen to my theory, I was brushed off with the statement that once you have an infection, your body is more susceptible to another. I prayed that the Lord would put a doctor in my path that would help. I was very persistent and finally with the help of a caring nurse, was able to intrigue a brilliant doctor to hear me out about my gut feeling. He agreed that something did not seem right and confirmed that John had an abnormal protein in his blood. He offered to further research John's case and continued to run further tests.
I spent the next few days sick with worry as I sat 12 hour shifts trying to comfort John. He was so stubborn and made multiple attempts to pull out his breathing tube. His hands had to be strapped down to the bed and his eyes pleaded for me to help him. Here was my tough Marine/Firefighter husband and seeing him with so many tubes coming in and out of his body was just awful. I felt so helpless and scared. John began to hallucinate and from sleep deprivation, went into what doctors called a state of delirium. He did not know where he was and soon could not recall simple facts about his family and later even his own name. Trying to calm a person in a state of paranoia who believes things are real is not easy. The only thing that offered some comfort during this difficult time was that some of his "actions" were actually very funny. The many concerned visitors were also a needed comfort. We now can look back and laugh at some of the things being on drugs can make a person do or believe is real.
When the doctor said he needed to perform a bone marrow test, I knew something was very wrong. I was hoping it would be some autoimmune something but sadly it was confirmed that John had Multiple Myeloma, a very serious form of cancer and it was terminal. My world as I knew it had came crashing down. We decided to wait and tell John when he was more stable. I was actually glad that I found out first because it gave me time to have an emotional breakdown and try to process everything. I spent my days by John's side and my nights researching everything I could find on Multiple Myeloma. My eyes were so puffy from all of the crying that I looked like Rocky.
It was day seven in the ICU and John was really improving. I felt so blessed by the caring support we were surrounded with and for my family, especially my mother who took care of my girls, my home and my business so I could stay with John. He knew that day as I kept crying that something else was wrong with him. I cry at Hallmark commercials but he knew these emotions went deeper than worry about his infection. I had to sit and watch the look on his face as a team of doctors broke the awful news. I do not think I have ever felt so sick inside. We were told that most patients do not live longer than about 3-5 years. One of my first thoughts went to our three year old little girl, she might not even remember her daddy. I cry as I write this now at the many fears for our future. I asked myself, why us? John and I read together the many files printed off of my research and we tried to educate ourselves to the awful details of this disease.
On day eight, I was able to bring my husband home. He left the hospital 25 pounds thinner and looked so frail. We were so comforted by visits from family and friends. We met for the first time with John's oncologist, who went over the chemo treatment plan and further results of his blood test. According to research charts, this is a cancer that the average age is 65-70 year old men, John should not have this.The cancer was even more aggressive than originally thought. John was actually handling the fact that he had cancer very well until he asked his doctor when he could return to work. I watched as his eyes filled with tears as she said he might not be able to work again. Being a fireman, is who John is.
There was nothing normal about our life anymore. I could not stop thinking about all the things I was going to miss about him. All the memories with our children he was going to miss out on. "Donuts with Dad" at school, cheering them on at their soccer games, all our annual camping trips, Father-Daughter dances, teaching them to drive a car, protecting his girls from bad boys just like him and walking them down the isle on their wedding day. I cried at every thought of living without him. Every song I listened to seemed to have words that flooded me with pain. Every movie or show we watched on T.V. seemed to stir up emotions.
I was consumed by my fears and how much longer would he be with us, would they be good years or filled with hospitals and sickness. Would we have time to do all the things we dreamed about doing someday...we want to make as many memories as a family as we can squeeze in. I prayed for wisdom as we made medical decisions and guidance through this journey. I knew I had to be strong, my husband and my kids needed me to be the source of strength in our family now. I have always been a very cheerful and positive person so as hard as it was, I started trying to see the positive things that this was bringing to our lives. We do not sweat the small stuff anymore, it seems so trivial in the big picture. We no longer take things for granted and truly appreciate all the little things.
If I can give one thing back to all of you caring supporters, it would be these words: Each day together is a gift to be cherished. Remember to tell those close to you just how much they are loved TODAY, because tomorrow might be too late.
I ended 2009 with my annual holiday letter to family and friends, sharing that it had been a difficult year for the Knighten family. I had a major surgery, we had some home disasters that resulted in expensive repair costs but the worst, John had been very sick battling some serious infections like three rounds of pneumonia. I maintained my positive attitude that 2010 was going to be better! As the clock struck midnight I watched my little girls cheer with delight and a lot of noise from banging on pots. John was lying down because he said he just didn't feel very good.
On January 1st my husband kissed me goodbye as he left for the fire station and stated that he had a really bad sore throat. I asked him to just stay home since, in his almost 16 years with the fire dept, he has only called in sick three times. He truly loves his job and has a very strong work ethic! It was also holiday pay which he felt we needed to recover the expense of the septic tank nightmare a week prior. I had no idea how his stubbornness would end up saving his life. At about 3:30 am John was awake pacing, afraid to wake up his fellow co-workers but at 4:30am he knew something was very wrong and was having a hard time breathing. As the firefighters and medics checked his vitals, they knew that John's airway was closing and rushed him to the ER.
Doctors later told me that the quick response of the firefighters and medics saved my husbands life. It was almost 5am on January 2nd when I received a call that my husband was in critical condition and the doctor was rushing John into the operating room to see if he could put in a breathing tube. They had him prepped for a full tracheotomy but were able to establish an airway through a microscopic opening that was left. John was intubated with a breathing tube of the size used on infants.
When I arrived at the hospital, it was like a scene from a movie where firefighters lined the hallway not leaving John until they knew everything was going to be ok. The emotional support was very touching. I was able to tell John how much I loved him before they quickly sedated him so he could rest. I soon learned that John had Strep Pneumoniae Sepsis with acute, severe Epiglottitis which to us non doctors was a very serious infection in his throat. This was extremely rare for an adult. We also learned that John had very significant anemia. As I cried holding my husband's hand so many emotions were running through me. I really did not know if he was going to live. I prayed for the Lord's grace and for John's healing.
I started questioning all of the medical history and knew with everything in me that we were missing something. This was a very healthy guy who in the past year continued to get one infection after another. I don't have a PhD after my name, but I knew SOMETHING was not working right with his immune system. As I urged several medical staff to listen to my theory, I was brushed off with the statement that once you have an infection, your body is more susceptible to another. I prayed that the Lord would put a doctor in my path that would help. I was very persistent and finally with the help of a caring nurse, was able to intrigue a brilliant doctor to hear me out about my gut feeling. He agreed that something did not seem right and confirmed that John had an abnormal protein in his blood. He offered to further research John's case and continued to run further tests.
I spent the next few days sick with worry as I sat 12 hour shifts trying to comfort John. He was so stubborn and made multiple attempts to pull out his breathing tube. His hands had to be strapped down to the bed and his eyes pleaded for me to help him. Here was my tough Marine/Firefighter husband and seeing him with so many tubes coming in and out of his body was just awful. I felt so helpless and scared. John began to hallucinate and from sleep deprivation, went into what doctors called a state of delirium. He did not know where he was and soon could not recall simple facts about his family and later even his own name. Trying to calm a person in a state of paranoia who believes things are real is not easy. The only thing that offered some comfort during this difficult time was that some of his "actions" were actually very funny. The many concerned visitors were also a needed comfort. We now can look back and laugh at some of the things being on drugs can make a person do or believe is real.
When the doctor said he needed to perform a bone marrow test, I knew something was very wrong. I was hoping it would be some autoimmune something but sadly it was confirmed that John had Multiple Myeloma, a very serious form of cancer and it was terminal. My world as I knew it had came crashing down. We decided to wait and tell John when he was more stable. I was actually glad that I found out first because it gave me time to have an emotional breakdown and try to process everything. I spent my days by John's side and my nights researching everything I could find on Multiple Myeloma. My eyes were so puffy from all of the crying that I looked like Rocky.
It was day seven in the ICU and John was really improving. I felt so blessed by the caring support we were surrounded with and for my family, especially my mother who took care of my girls, my home and my business so I could stay with John. He knew that day as I kept crying that something else was wrong with him. I cry at Hallmark commercials but he knew these emotions went deeper than worry about his infection. I had to sit and watch the look on his face as a team of doctors broke the awful news. I do not think I have ever felt so sick inside. We were told that most patients do not live longer than about 3-5 years. One of my first thoughts went to our three year old little girl, she might not even remember her daddy. I cry as I write this now at the many fears for our future. I asked myself, why us? John and I read together the many files printed off of my research and we tried to educate ourselves to the awful details of this disease.
On day eight, I was able to bring my husband home. He left the hospital 25 pounds thinner and looked so frail. We were so comforted by visits from family and friends. We met for the first time with John's oncologist, who went over the chemo treatment plan and further results of his blood test. According to research charts, this is a cancer that the average age is 65-70 year old men, John should not have this.The cancer was even more aggressive than originally thought. John was actually handling the fact that he had cancer very well until he asked his doctor when he could return to work. I watched as his eyes filled with tears as she said he might not be able to work again. Being a fireman, is who John is.
There was nothing normal about our life anymore. I could not stop thinking about all the things I was going to miss about him. All the memories with our children he was going to miss out on. "Donuts with Dad" at school, cheering them on at their soccer games, all our annual camping trips, Father-Daughter dances, teaching them to drive a car, protecting his girls from bad boys just like him and walking them down the isle on their wedding day. I cried at every thought of living without him. Every song I listened to seemed to have words that flooded me with pain. Every movie or show we watched on T.V. seemed to stir up emotions.
I was consumed by my fears and how much longer would he be with us, would they be good years or filled with hospitals and sickness. Would we have time to do all the things we dreamed about doing someday...we want to make as many memories as a family as we can squeeze in. I prayed for wisdom as we made medical decisions and guidance through this journey. I knew I had to be strong, my husband and my kids needed me to be the source of strength in our family now. I have always been a very cheerful and positive person so as hard as it was, I started trying to see the positive things that this was bringing to our lives. We do not sweat the small stuff anymore, it seems so trivial in the big picture. We no longer take things for granted and truly appreciate all the little things.
If I can give one thing back to all of you caring supporters, it would be these words: Each day together is a gift to be cherished. Remember to tell those close to you just how much they are loved TODAY, because tomorrow might be too late.
Gorgeous Photos Taken Of The Knightens By Local Photographer Amber Glanville
Check out these AMAZING photos of the Knightens. These were taken by local photographer Amber Glanville. Amber is able to capture so much personality and reflections in the eyes of her subjects. She truly is an amazing photographer! Upon hearing of their story, Amber graciously offered her services as a gift for the Knightens - a gift that will be cherished by this family for decades to follow.
Upcoming Pasta Feed And Auction In Seattle, Washington!
There will be a pasta feed and auction at McCoy's Firehouse in Seattle, WA on Saturday June 12th at 5pm. Your $15.00 donation includes dinner and entertainment by the Seattle Fire Fighters Pipes and Drums. Contact danettekahler@yahoo.com for more info.
Donkey Basketball Game: May 16th, 3pm-6pm!
On May 16th from 3pm – 6pm, players from the Spokane City Fire Department, Spokane Valley Fire Department, Spokane Police Department and Spokane County Sheriff’s Office will be riding donkeys in what is sure to be a great basketball game! David’s Pizza will be selling yummy pizzas at the game – a portion of their proceeds will be donated as well!
Save money on advance pre-sale tickets available on this site: See “buy your tickets to the donkey basketball game” box just under the “help save John” box.
A fun time and lots of laughs for all!
Location: Valley Hub, 19619 East Cataldo Ave, Liberty Lake, WA 99016
Save money on advance pre-sale tickets available on this site: See “buy your tickets to the donkey basketball game” box just under the “help save John” box.
A fun time and lots of laughs for all!
Location: Valley Hub, 19619 East Cataldo Ave, Liberty Lake, WA 99016
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