Dawn's Battle with Crohn's and Cancer
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The short story:
Dawn just had a life-saving surgery that will bring her to her out-of-pocket insurance max of $7,900. Her body won’t be ready for the second surgery until just after her insurance plan year starts again. This will bring another $7,900 hospital bill. That total alone is $15,800. Time in the hospital and recovery time means two months of missed work. As Dawn was literally about to start a new job on April 15th, she is not eligible for FMLA. Please help us raise the money needed to cover the life-saving procedure Dawn had last week, the second surgery she needs to repair her body back to regular functions, and to cover her bills while she heals.
The full story:
Hello, most of you do not know me. I’m Dawn’s introverted other half, Andy. While many have heard her talk about me, few have ever met me. All of you know Dawn as the energetic, happy, outgoing person that makes new friends and lasting relationships wherever she goes. Being the man behind the front door I’ve come to know a side of Dawn very few others ever get to see. I get to see the sickness. Many of you may be just learning about Dawn’s battle with Crohn’s. She’s never wanted to be labeled by a disease and has kept the struggle hidden behind that cheerful smile and the privacy of our front door. Many of you may have a perception of Crohn’s disease developed from seeing all the recent advertisements for medications that show sunny days and the smiling faces of people who no longer have to miss their child’s soccer game or family bbq because of an upset stomach. The reality that doesn’t make it into these commercials is that Crohn’s is a scary thing that can cause life-threatening inflammation. It can take someone like Dawn with enough savings to buy a house to a point where just covering the monthly expenses and waiting for the next medical bill to arrive is a constant worry. It often manifests itself in ways and areas of the body that have nothing to do with the gut. Some have been definitively linked to Crohn’s and some are still a mystery. That’s where Dawn’s journey with this disease started.
I guess the best way to tell you how we ended up at this point financially is to start from the beginning. I must say that dates and timelines are a rough estimate because at this point it all starts blurring together. About 5 years ago she started to notice that she was having some stomach issues every other week or so that she assumed was one of her many food allergies or a stomach bug. This was followed by a strange pain and discomfort in her knee. The knee pain became enough of an issue to see a doctor and an MRI revealed an unexplained area of necrosis in the cartilage of her knee joint. This prompted the first surgery to go into the knee and clean out the area of necrosis, along with harvesting healthy cartilage cells from a non weight bearing section. These cells were sent off to be combined with bovine material and grown in a lab while Dawn was confined to crutches. Then the second surgery a month later to reintroduce the grown cells back into her knee. This was followed by a long, painful recovery on crutches, as well as being strapped into a perpetual motion machine for hours a day that constantly bent and straightened her painful knee to keep it from fusing in place while healing. Over the course of recovery, the first of the medical bills began arriving in the mail.
Some time after recovery, she had some discomfort and a clicking sensation in the same knee when she walked. It was determined that some of the new cells had grown beyond their intended boundary and she went in for a third surgery to clean up the excess material. The medical bills continued arriving.
The next sign was a painful eye condition, known as iritis, that forced her back to the doctor and onto a steroid eye drop. When the iritis occurred a second time it was determined that there was an underlying autoimmune condition that needed to be addressed. That led us to a specialist in Denver, the first of half a dozen colonoscopies, & a diagnosis of Crohn’s. This is where life really started to change. The regular doctors visit began. Medications, supplements, dietary changes became the focus of daily life and conversation. I watched a woman who had a passion for life and adventure start to question every decision and every meal. Taking every precaution, yet still constantly worrying the next adventure or meal could trigger a random inflammatory response from her immune system. I watched the girl that used to get excited about trying strange and unusual food become fearful of eating. Imagine being scared to eat the very food you need to survive.
Despite all her careful efforts, in the summer of 2017 her Crohn’s flared up. Her exhaustion, elevated fevers, and skyrocketing inflammation numbers landed her in the hospital. It took 6 days of IV pain meds and steroids to get things under control before she could be released. Then came more bills, and medication, and a follow-up colonoscopy to confirm remission. For most people outside of our front door it would’ve appeared as if everything was all better and back to normal. Behind our front door was the constant worry of how to avoid setting off an immune response like that again. The endless research and googling of diets and chemicals to avoid that could affect health and immune responses.
Aside from the physical aspect of Crohn’s, the mental aspect seeps into every corner of your daily life. What foods you buy and eat, what household cleaners you use, your laundry detergent, what’s in your tap water, your soap, shampoo, & skincare products. What if I cause this to happen again because of something I’m doing?
It was all able to be managed and kept behind closed doors until things started to take a turn around again at Christmas. The fatigue and stomach discomfort starts off slowly. So much so that even we don’t recognize what’s happening at first, but many of you may have noticed that you were seeing or hearing from her less. Then around the beginning of February, her ankle suddenly became swollen and painful for no reason. We saw doctors, infectious disease specialists, orthopedic specialists, and had MRI’s without getting any real answers. And more bills arrived.
At this point we knew it was another Crohn’s symptom and flare so her GI Specialist in Denver started the steroid pills to try and turn it around. After a month or so of steroids, the pain and fevers were getting worse and we were debating if it was time to go to the hospital. The fact that we are still paying on the 2017 hospital stay shouldn’t have been a consideration when deciding whether or not to go to the Emergency Room, but that’s our reality. The decision was made to go and it was apparently just in time.
They admitted her immediately, with inflammation numbers over 200 (“normal” inflammation is 1) and started the course of IV steroids to try and hold off emergency surgery. As is often the case with Crohn’s, steroids lose their effectiveness the more you use them and after 3 days she still wasn’t responding to treatment. The doctors made the decision to do some imaging to get a better look at what was going on in her colon and those images would change the course of everything.
We were hoping the doctor would come in to say that the images showed things weren’t that bad and could heal with medication. Instead, we were told the inflammation was extremely bad, but there was a bigger problem. The imaging revealed a mass on her kidney that they were 90% sure was cancer. I didn’t know it was possible to have the wind knocked out of you when you are already utterly deflated but I assure you it is.
After a week of discussions with specialists and surgical teams it was determined that the best course of action was to remove the mass on the kidney and the portion of the colon with active Crohn’s inflammation in the same surgery. They couldn’t take the cancer and leave the body fighting active Crohn’s while trying to heal. They couldn’t medicate and try to control the Crohn’s because those meds would fuel the cancer. This was the only viable option.
So that brings us to today. Dawn is home recovering from a major surgery that saved, but also completely altered, her life. No idea what the bill will be for a 16-day hospital stay with major surgery, but it will be arriving in the mailbox shortly and added to the pile. She now has an even stricter diet, and her small intestine routed out of her side to an ileostomy bag. They couldn’t reconnect her healthy portion of colon because her ability to heal has been compromised by months of steroids and fighting inflammation. And it’s not over yet.
In another 3 months, once her body has rested, she will have to undergo another surgery to reverse the ileostomy and reconnect the colon so everything goes back to functioning normally. And the bills will keep coming.
Which brings us to the purpose of this campaign. I don’t know that I have all the bills and figures to set a complete financial goal. What I can do is shine a light on the emotional and financial toll that this journey has taken behind closed doors. I have watched her spend savings that could have bought a house on her healthcare. I have seen her agonize over the decision to preserve her health at the sacrifice of her savings or sacrifice her health to preserve her savings. I’ve spent countless nights watching her pour over spreadsheets and Master Bills from healthcare providers. I’ve seen the yearly agony of trying to find an insurance plan in the private market that will cover her doctors and medications.
Most know that Dawn is allergic to gluten but many would be surprised to learn that the generic form of most medications contain gluten as a filler. This forces her to take name brand formulations which insurance often decides aren’t covered. The opinion of the insurance companies is that you should take the cheaper medication that will make you sick or pay full price for name brand. I’ve seen her debate whether she thinks she will need to go to the hospital in the coming year because if so she should pick the plan with the higher monthly premium and lower out of pocket max, but if not she should go with the lower monthly payment and higher out of pocket max.
More and more, shopping for health insurance is feeling like a game of chance that would be more at home in the casinos of Cripple Creek. And the house always wins. For the past four years we have spent more on her monthly health insurance and medications than we spend on rent. I’ve seen her agonize over, and delay the decision, to go to the hospital for treatment because we are still making payments on the last hospital stay.
This latest hospital stay, alone, saw me out of work for two weeks to be with her in the hospital in Denver when she couldn’t walk, or open a drink, or make it to the bathroom without help. I’m grateful that as an independent contractor for a couple of amazing property owners I have the freedom to take that time, but if I don’t work I don’t get paid. Even as I type this I’m still not entirely sure how I will make rent at the end of the month. She has taken off 3 weeks so far for this surgery and will be out of work for more weeks to come.
I’ve seen the life she wanted to live with a house and child of our own be eclipsed by the every day struggle of battling this disease behind closed doors and out of the public eye. I’ve watched the wedding she’s wanted since I proposed get pushed farther down the road because spending even a small amount on the simplest of weddings in the face of mounting medical bills isn’t feasible. In the 7 years we’ve been together we’ve never had a vacation together aside from a trip back east to visit family we hadn’t seen in too long, and a trip to attend my sister’s funeral. With mounting medical debt taking a trip somewhere together is a fantasy right along with winning the lotto or Publishers Clearinghouse knocking on your door.
I’ve watched the vibrant, adventurous, energetic soul that I fell in love with become a 103 pound shadow of her former self because the Crohn’s inflammation is robbing her body of absorbing the nutrition it needs to sustain itself. I've watched her become consumed with fear and worry about the present and future. I’ve held her hand from beside a hospital bed while she squirmed in agony knowing that it would continue for hours and there’s nothing I could do to stop it. I’ve stood with her in the bathroom at 2 am as she sobbed while leaning over the toilet trying to empty her ileostomy bag for the first time and realizing this is her life.
Through all of this I’ve seen her drive and determination to fight on and push through this to get her life back. I’ve been inspired by her optimism that everything happens for a reason and the Crohn’s is what allowed them to find the cancer before it was a life-threatening issue. Sadly the fight is not over yet. There’s another painful surgery on the horizon in 3 months. There’s also the reality that Crohn’s is a lifelong disease that could flare back up at any time in any number of ways. I can’t begin to know what challenges will come around the next bend. I only know that I’m here for it, whatever it is, and that she can use whatever assistance you are able to provide to help see her through this and bring back the excited, adventurous soul we all know and love.
Dawn just had a life-saving surgery that will bring her to her out-of-pocket insurance max of $7,900. Her body won’t be ready for the second surgery until just after her insurance plan year starts again. This will bring another $7,900 hospital bill. That total alone is $15,800. Time in the hospital and recovery time means two months of missed work. As Dawn was literally about to start a new job on April 15th, she is not eligible for FMLA. Please help us raise the money needed to cover the life-saving procedure Dawn had last week, the second surgery she needs to repair her body back to regular functions, and to cover her bills while she heals.
The full story:
Hello, most of you do not know me. I’m Dawn’s introverted other half, Andy. While many have heard her talk about me, few have ever met me. All of you know Dawn as the energetic, happy, outgoing person that makes new friends and lasting relationships wherever she goes. Being the man behind the front door I’ve come to know a side of Dawn very few others ever get to see. I get to see the sickness. Many of you may be just learning about Dawn’s battle with Crohn’s. She’s never wanted to be labeled by a disease and has kept the struggle hidden behind that cheerful smile and the privacy of our front door. Many of you may have a perception of Crohn’s disease developed from seeing all the recent advertisements for medications that show sunny days and the smiling faces of people who no longer have to miss their child’s soccer game or family bbq because of an upset stomach. The reality that doesn’t make it into these commercials is that Crohn’s is a scary thing that can cause life-threatening inflammation. It can take someone like Dawn with enough savings to buy a house to a point where just covering the monthly expenses and waiting for the next medical bill to arrive is a constant worry. It often manifests itself in ways and areas of the body that have nothing to do with the gut. Some have been definitively linked to Crohn’s and some are still a mystery. That’s where Dawn’s journey with this disease started.
I guess the best way to tell you how we ended up at this point financially is to start from the beginning. I must say that dates and timelines are a rough estimate because at this point it all starts blurring together. About 5 years ago she started to notice that she was having some stomach issues every other week or so that she assumed was one of her many food allergies or a stomach bug. This was followed by a strange pain and discomfort in her knee. The knee pain became enough of an issue to see a doctor and an MRI revealed an unexplained area of necrosis in the cartilage of her knee joint. This prompted the first surgery to go into the knee and clean out the area of necrosis, along with harvesting healthy cartilage cells from a non weight bearing section. These cells were sent off to be combined with bovine material and grown in a lab while Dawn was confined to crutches. Then the second surgery a month later to reintroduce the grown cells back into her knee. This was followed by a long, painful recovery on crutches, as well as being strapped into a perpetual motion machine for hours a day that constantly bent and straightened her painful knee to keep it from fusing in place while healing. Over the course of recovery, the first of the medical bills began arriving in the mail.
Some time after recovery, she had some discomfort and a clicking sensation in the same knee when she walked. It was determined that some of the new cells had grown beyond their intended boundary and she went in for a third surgery to clean up the excess material. The medical bills continued arriving.
The next sign was a painful eye condition, known as iritis, that forced her back to the doctor and onto a steroid eye drop. When the iritis occurred a second time it was determined that there was an underlying autoimmune condition that needed to be addressed. That led us to a specialist in Denver, the first of half a dozen colonoscopies, & a diagnosis of Crohn’s. This is where life really started to change. The regular doctors visit began. Medications, supplements, dietary changes became the focus of daily life and conversation. I watched a woman who had a passion for life and adventure start to question every decision and every meal. Taking every precaution, yet still constantly worrying the next adventure or meal could trigger a random inflammatory response from her immune system. I watched the girl that used to get excited about trying strange and unusual food become fearful of eating. Imagine being scared to eat the very food you need to survive.
Despite all her careful efforts, in the summer of 2017 her Crohn’s flared up. Her exhaustion, elevated fevers, and skyrocketing inflammation numbers landed her in the hospital. It took 6 days of IV pain meds and steroids to get things under control before she could be released. Then came more bills, and medication, and a follow-up colonoscopy to confirm remission. For most people outside of our front door it would’ve appeared as if everything was all better and back to normal. Behind our front door was the constant worry of how to avoid setting off an immune response like that again. The endless research and googling of diets and chemicals to avoid that could affect health and immune responses.
Aside from the physical aspect of Crohn’s, the mental aspect seeps into every corner of your daily life. What foods you buy and eat, what household cleaners you use, your laundry detergent, what’s in your tap water, your soap, shampoo, & skincare products. What if I cause this to happen again because of something I’m doing?
It was all able to be managed and kept behind closed doors until things started to take a turn around again at Christmas. The fatigue and stomach discomfort starts off slowly. So much so that even we don’t recognize what’s happening at first, but many of you may have noticed that you were seeing or hearing from her less. Then around the beginning of February, her ankle suddenly became swollen and painful for no reason. We saw doctors, infectious disease specialists, orthopedic specialists, and had MRI’s without getting any real answers. And more bills arrived.
At this point we knew it was another Crohn’s symptom and flare so her GI Specialist in Denver started the steroid pills to try and turn it around. After a month or so of steroids, the pain and fevers were getting worse and we were debating if it was time to go to the hospital. The fact that we are still paying on the 2017 hospital stay shouldn’t have been a consideration when deciding whether or not to go to the Emergency Room, but that’s our reality. The decision was made to go and it was apparently just in time.
They admitted her immediately, with inflammation numbers over 200 (“normal” inflammation is 1) and started the course of IV steroids to try and hold off emergency surgery. As is often the case with Crohn’s, steroids lose their effectiveness the more you use them and after 3 days she still wasn’t responding to treatment. The doctors made the decision to do some imaging to get a better look at what was going on in her colon and those images would change the course of everything.
We were hoping the doctor would come in to say that the images showed things weren’t that bad and could heal with medication. Instead, we were told the inflammation was extremely bad, but there was a bigger problem. The imaging revealed a mass on her kidney that they were 90% sure was cancer. I didn’t know it was possible to have the wind knocked out of you when you are already utterly deflated but I assure you it is.
After a week of discussions with specialists and surgical teams it was determined that the best course of action was to remove the mass on the kidney and the portion of the colon with active Crohn’s inflammation in the same surgery. They couldn’t take the cancer and leave the body fighting active Crohn’s while trying to heal. They couldn’t medicate and try to control the Crohn’s because those meds would fuel the cancer. This was the only viable option.
So that brings us to today. Dawn is home recovering from a major surgery that saved, but also completely altered, her life. No idea what the bill will be for a 16-day hospital stay with major surgery, but it will be arriving in the mailbox shortly and added to the pile. She now has an even stricter diet, and her small intestine routed out of her side to an ileostomy bag. They couldn’t reconnect her healthy portion of colon because her ability to heal has been compromised by months of steroids and fighting inflammation. And it’s not over yet.
In another 3 months, once her body has rested, she will have to undergo another surgery to reverse the ileostomy and reconnect the colon so everything goes back to functioning normally. And the bills will keep coming.
Which brings us to the purpose of this campaign. I don’t know that I have all the bills and figures to set a complete financial goal. What I can do is shine a light on the emotional and financial toll that this journey has taken behind closed doors. I have watched her spend savings that could have bought a house on her healthcare. I have seen her agonize over the decision to preserve her health at the sacrifice of her savings or sacrifice her health to preserve her savings. I’ve spent countless nights watching her pour over spreadsheets and Master Bills from healthcare providers. I’ve seen the yearly agony of trying to find an insurance plan in the private market that will cover her doctors and medications.
Most know that Dawn is allergic to gluten but many would be surprised to learn that the generic form of most medications contain gluten as a filler. This forces her to take name brand formulations which insurance often decides aren’t covered. The opinion of the insurance companies is that you should take the cheaper medication that will make you sick or pay full price for name brand. I’ve seen her debate whether she thinks she will need to go to the hospital in the coming year because if so she should pick the plan with the higher monthly premium and lower out of pocket max, but if not she should go with the lower monthly payment and higher out of pocket max.
More and more, shopping for health insurance is feeling like a game of chance that would be more at home in the casinos of Cripple Creek. And the house always wins. For the past four years we have spent more on her monthly health insurance and medications than we spend on rent. I’ve seen her agonize over, and delay the decision, to go to the hospital for treatment because we are still making payments on the last hospital stay.
This latest hospital stay, alone, saw me out of work for two weeks to be with her in the hospital in Denver when she couldn’t walk, or open a drink, or make it to the bathroom without help. I’m grateful that as an independent contractor for a couple of amazing property owners I have the freedom to take that time, but if I don’t work I don’t get paid. Even as I type this I’m still not entirely sure how I will make rent at the end of the month. She has taken off 3 weeks so far for this surgery and will be out of work for more weeks to come.
I’ve seen the life she wanted to live with a house and child of our own be eclipsed by the every day struggle of battling this disease behind closed doors and out of the public eye. I’ve watched the wedding she’s wanted since I proposed get pushed farther down the road because spending even a small amount on the simplest of weddings in the face of mounting medical bills isn’t feasible. In the 7 years we’ve been together we’ve never had a vacation together aside from a trip back east to visit family we hadn’t seen in too long, and a trip to attend my sister’s funeral. With mounting medical debt taking a trip somewhere together is a fantasy right along with winning the lotto or Publishers Clearinghouse knocking on your door.
I’ve watched the vibrant, adventurous, energetic soul that I fell in love with become a 103 pound shadow of her former self because the Crohn’s inflammation is robbing her body of absorbing the nutrition it needs to sustain itself. I've watched her become consumed with fear and worry about the present and future. I’ve held her hand from beside a hospital bed while she squirmed in agony knowing that it would continue for hours and there’s nothing I could do to stop it. I’ve stood with her in the bathroom at 2 am as she sobbed while leaning over the toilet trying to empty her ileostomy bag for the first time and realizing this is her life.
Through all of this I’ve seen her drive and determination to fight on and push through this to get her life back. I’ve been inspired by her optimism that everything happens for a reason and the Crohn’s is what allowed them to find the cancer before it was a life-threatening issue. Sadly the fight is not over yet. There’s another painful surgery on the horizon in 3 months. There’s also the reality that Crohn’s is a lifelong disease that could flare back up at any time in any number of ways. I can’t begin to know what challenges will come around the next bend. I only know that I’m here for it, whatever it is, and that she can use whatever assistance you are able to provide to help see her through this and bring back the excited, adventurous soul we all know and love.
Organizer
Dawn Huston
Organizer
Colorado Springs, CO
