Help Ryan with Lifesaving Leukemia Treatment
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On May 22 of 2019, Ryan was diagnosed with Acute Lymphoblastic Leukemia.
This has been an unbelievably hard path for Ryan and her family to walk for over 18 months, and with her recent relapse, her family is in the crosshairs again of her potentially life ending disease. Ryan is now scheduled for a stem cell transplant sometime during June of next year, and the average cost is $337,000. Luckily, Ryan and Kevin have insurance but insurance does not cover the daily maintenance expenses, home modifications, travel for care, food, and accommodations which have already accumulated and could be well over $125,000.
The need for their family is great, and we are asking for support to meet their needs for what may lay in store for them.
The Science:
While Ryan received great initial care in Colorado, her team could not keep up with the science of her type of Leukemia or the aggressiveness of her type of leukemia. Ryan has a CDKN2A gene deletion, making her overall prognosis poor. The investigational study that she's enrolled in at MD Anderson, in Houston, is to see if combining a Hyper-CVD course that’s more traditional and is comprised of chemo and steroids, with new immunotherapy drugs like inotuzumab, rituximab, and blinatumomab, will give her a better chance at a deeper remission, which will then potentially make her stem cell transplant in the summer of 2021 more successful.
This is all scary. Transplant results are favorable, but it is the graft versus host disease (GVHD) post transplant that usually kills people. As far as we know, having a good match (10/10) for donor stem cells is the best option for survival so after donating to this fundraiser, PLEASE REGISTER FOR BE THE MATCH (https://bethematch.org/). It takes 6 months for the registry to update with new donors SO REGISTER NOW AND YOU MIGHT BE SAVING RYAN'S LIFE. If it’s not her, you could be saving some sweet 2 year old somewhere that hasn’t even had a chance to live yet. If you’ve registered, please post here on this Go Fund Me page that you have as encouragement to those that haven’t yet registered.
Almost anything could go wrong in the first 100 days after Ryan's “re-birthday.” When she is released from the hospital post transplant, she will be like a newborn baby (a very vocal, opinionated, aggressive, grumpy, cussing, sweaty, miserable newborn baby potentially riddled with rashes and an angry GI track) for close to a year. No immune system, no vaccines, no 'nuthin. Kevin will be her caregiver and he can't leave her for anything for those 100 days even though he will absolutely want to; not to take Kalen for a walk, not to walk the dog - not even groceries. She will not be able to be left alone for a minute.
The Initial Diagnosis:
Ryan's symptoms started right before she and Kevin left for their romantic getaway to New Orleans, at the end of April in 2019. While in New Orleans at Jazz Fest, she could barely dance and it was painful to stand; her hips continuously ached. She took ibuprofen and kept going, and enjoyed Jazz Fest and her handsome husband’s company.
Kevin was in New Orleans for training, and after their time together, she headed to NC for work on May 7. She fell while running to catch a flight and twisted her ankle; her hips and low back kept hurting terribly and it was getting harder to walk. She was having night sweats that left her drenched and had to change clothes once a night. Three nights later, she was in so much pain that she woke up in the middle of the night and asked Kevin’s parents, Peggy and Ken, to take her to the emergency department. When she got there, they suggested that it was rheumatoid arthritis and gave her steroids and sent her home. Sitting had started to become painful. She had started to hemorrhage, and her hips, legs, back, and ribcage were painful to touch.
Ryan had to make it home and emotionally prepped herself to get on a plane to head to Colorado Springs. She knew if she made her flight, Kevin would be there to help her.
May 15 2019, marks the most pain that she was ever in (minus childbirth, of course). She was passing out at the airport and managed to keep it together long enough to act normal while boarding the plane. The flight was not great- the poor guy next to her had to witness her profuse sweating and her fidgeting hard to find a comfortable position. She probably looked like she was coming off of something hard.
Kevin picked her up from the airport and they headed straight to the Emergency Department. They spent 10 hours there and again they found nothing wrong, said that it could be the flu, and sent her home. Her labs showed that she had blast cells in her blood at that time (which they saw much later) but no one noticed them - and probably didn’t look- because no one thinks “cancer” for someone young and healthy.
She scheduled an appointment with her family doc and had labs drawn on May 17 for a slew of different things- immunodeficiency issues, tick born illnesses, etc. and then had to wait for the results.
Those days waiting were some of the hardest. The results finally came back in on May 22, and the nurse from the doctor’s office called to ask if she had bruises. She said that Ryan needed to go to Emergency Department, ASAP. They sent her labs to the ED and they were ready for her when she got there. Kevin dropped her off and had to take Kalen to daycare. The ED nurses drew more labs, and after Kevin returned, the doctor delivered the news: they found blast cells in her blood and she was being rushed to Denver. After the doctor left the room, Kevin and Ryan sobbed; in shock. They didn’t have time to go home and pack a bag, to process, or to see Kalen.
A part of her was relieved to know what was wrong, to know that she was going to be treated. She had no idea that she was about to spend the next 34 days living inside of a medically induced prison, and that her prognosis was poor.
The Relapse:
For most of 2020, Ryan's bones have ached under the weight of their own pressure. To alleviate this, her morning ritual has been to get up before the sun, slip into their hot tub with a cup of coffee, and watch the sunrise on another glorious day of being alive. She listened to western screech owls call across the arroyo. She watched great horned owls hunt. She has seen the migratory patterns of winged visitors at their feeders, joining her family for meals. She communed with magpies waaaawk waaaaaawking in the wee hours of the morning. It was her happy place of grounding before long, busy days.
By fall, though, the pain in her body shifted. It became a little more intense and a little more specific. Her outer hips hurt tremendously. Her lower back cracked and groaned with every move. Her left interior rib cage felt tender and painful to touch and she began to have a harder and harder time breathing. And then it hit her - these were all symptoms that she had right before her diagnosis last year.
It took a lot of advocating to get the tests that she needed, and when the results of her bone marrow biopsy came in; her family's fears were confirmed. She relapsed.
Luckily, she caught it early this time. Luckily, her family had time to shore up things like the greenhouse, cook meals from the garden before she is not allowed to eat certain foods, and to spend time with loved ones before heading deep into chemo again to prepare her body for a bone marrow transplant.
When she stops for a second and allow herself to soak in the reality that her cancer is back, she's doubled over and hyperventilating in fear. She's terrified. The transplant process is long and arduous, and will keep her family away from home for a year.
On Parenting with Cancer:
Having a toddler while being sick has had its own extreme challenges. At first, Ryan fixated on the fact that Kalen might not remember any of this and that gave her some relief. She didn't want him to remember days where she couldn’t get out of bed, being physically ill, not being able to get on the floor and play with him and not taking him outside like she used to.
After talking with other moms that have cancer, she realized that there is a huge gift that she can give Kalen, much more than others can give him. She can give him the gift of vulnerability, and show him strength in vulnerability. By watching his mama struggle, he watches her be stronger than imaginable. She hopes that it will allow him to develop empathy for others that he sees struggling in the future. She hopes that it allows him to be gentler on himself when he struggles in the future. Now, she hopes that he remembers this. She hopes that he uses the experiences of seeing his mom at her worst to go do good in the world. And she hopes that he remembers the community that came to support him and his family in their time of great need and provides that kind of love and support to others when he's able to, someday.
Someday, she hopes to be back to her normal self and be able to run around with him outside. Someday, she’ll be able to chase him around the neighborhood on his bike. Someday she will be the parent that she wants to be again. But for now she has to be OK with the small victories of being able to prepare a healthy meal, reading him books, and pouring her affection all over him so that he knows how much his mama loves him and how hard she’s been fighting for him.
Ryan's Greatest Warrior:
Her son owns her heart, no question. But he was born out of the deep, enduring love that she has for Kevin. If Ryan is being honest with herself, her husband is the fiercest warrior in their cancer battle - much more fierce than she is. What she endures is nothing compared to what he juggles to keep being an absolutely incredible father, a devoted husband, an admired professional, AND as a nurse, a chef, a cleaning crew, a therapist, a mechanic... all of it. Over the past 18 months, she's done one thing - stay alive - while Kevin has been fulfilling all of these roles and more. Her heart swells with gratitude to know that her husband worked incredibly hard to keep their family afloat. What Ryan wants for everyone, if you haven’t already, is to find yourself a fierce warrior who loves you with everything that they’ve got and will be by your side no matter what. You deserve nothing less.
On May 22 of 2019, Ryan was diagnosed with Acute Lymphoblastic Leukemia.
This has been an unbelievably hard path for Ryan and her family to walk for over 18 months, and with her recent relapse, her family is in the crosshairs again of her potentially life ending disease. Ryan is now scheduled for a stem cell transplant sometime during June of next year, and the average cost is $337,000. Luckily, Ryan and Kevin have insurance but insurance does not cover the daily maintenance expenses, home modifications, travel for care, food, and accommodations which have already accumulated and could be well over $125,000.
The need for their family is great, and we are asking for support to meet their needs for what may lay in store for them.
The Science:
While Ryan received great initial care in Colorado, her team could not keep up with the science of her type of Leukemia or the aggressiveness of her type of leukemia. Ryan has a CDKN2A gene deletion, making her overall prognosis poor. The investigational study that she's enrolled in at MD Anderson, in Houston, is to see if combining a Hyper-CVD course that’s more traditional and is comprised of chemo and steroids, with new immunotherapy drugs like inotuzumab, rituximab, and blinatumomab, will give her a better chance at a deeper remission, which will then potentially make her stem cell transplant in the summer of 2021 more successful.
This is all scary. Transplant results are favorable, but it is the graft versus host disease (GVHD) post transplant that usually kills people. As far as we know, having a good match (10/10) for donor stem cells is the best option for survival so after donating to this fundraiser, PLEASE REGISTER FOR BE THE MATCH (https://bethematch.org/). It takes 6 months for the registry to update with new donors SO REGISTER NOW AND YOU MIGHT BE SAVING RYAN'S LIFE. If it’s not her, you could be saving some sweet 2 year old somewhere that hasn’t even had a chance to live yet. If you’ve registered, please post here on this Go Fund Me page that you have as encouragement to those that haven’t yet registered.
Almost anything could go wrong in the first 100 days after Ryan's “re-birthday.” When she is released from the hospital post transplant, she will be like a newborn baby (a very vocal, opinionated, aggressive, grumpy, cussing, sweaty, miserable newborn baby potentially riddled with rashes and an angry GI track) for close to a year. No immune system, no vaccines, no 'nuthin. Kevin will be her caregiver and he can't leave her for anything for those 100 days even though he will absolutely want to; not to take Kalen for a walk, not to walk the dog - not even groceries. She will not be able to be left alone for a minute.
The Initial Diagnosis:
Ryan's symptoms started right before she and Kevin left for their romantic getaway to New Orleans, at the end of April in 2019. While in New Orleans at Jazz Fest, she could barely dance and it was painful to stand; her hips continuously ached. She took ibuprofen and kept going, and enjoyed Jazz Fest and her handsome husband’s company.
Kevin was in New Orleans for training, and after their time together, she headed to NC for work on May 7. She fell while running to catch a flight and twisted her ankle; her hips and low back kept hurting terribly and it was getting harder to walk. She was having night sweats that left her drenched and had to change clothes once a night. Three nights later, she was in so much pain that she woke up in the middle of the night and asked Kevin’s parents, Peggy and Ken, to take her to the emergency department. When she got there, they suggested that it was rheumatoid arthritis and gave her steroids and sent her home. Sitting had started to become painful. She had started to hemorrhage, and her hips, legs, back, and ribcage were painful to touch.
Ryan had to make it home and emotionally prepped herself to get on a plane to head to Colorado Springs. She knew if she made her flight, Kevin would be there to help her.
May 15 2019, marks the most pain that she was ever in (minus childbirth, of course). She was passing out at the airport and managed to keep it together long enough to act normal while boarding the plane. The flight was not great- the poor guy next to her had to witness her profuse sweating and her fidgeting hard to find a comfortable position. She probably looked like she was coming off of something hard.
Kevin picked her up from the airport and they headed straight to the Emergency Department. They spent 10 hours there and again they found nothing wrong, said that it could be the flu, and sent her home. Her labs showed that she had blast cells in her blood at that time (which they saw much later) but no one noticed them - and probably didn’t look- because no one thinks “cancer” for someone young and healthy.
She scheduled an appointment with her family doc and had labs drawn on May 17 for a slew of different things- immunodeficiency issues, tick born illnesses, etc. and then had to wait for the results.
Those days waiting were some of the hardest. The results finally came back in on May 22, and the nurse from the doctor’s office called to ask if she had bruises. She said that Ryan needed to go to Emergency Department, ASAP. They sent her labs to the ED and they were ready for her when she got there. Kevin dropped her off and had to take Kalen to daycare. The ED nurses drew more labs, and after Kevin returned, the doctor delivered the news: they found blast cells in her blood and she was being rushed to Denver. After the doctor left the room, Kevin and Ryan sobbed; in shock. They didn’t have time to go home and pack a bag, to process, or to see Kalen.
A part of her was relieved to know what was wrong, to know that she was going to be treated. She had no idea that she was about to spend the next 34 days living inside of a medically induced prison, and that her prognosis was poor.
The Relapse:
For most of 2020, Ryan's bones have ached under the weight of their own pressure. To alleviate this, her morning ritual has been to get up before the sun, slip into their hot tub with a cup of coffee, and watch the sunrise on another glorious day of being alive. She listened to western screech owls call across the arroyo. She watched great horned owls hunt. She has seen the migratory patterns of winged visitors at their feeders, joining her family for meals. She communed with magpies waaaawk waaaaaawking in the wee hours of the morning. It was her happy place of grounding before long, busy days.
By fall, though, the pain in her body shifted. It became a little more intense and a little more specific. Her outer hips hurt tremendously. Her lower back cracked and groaned with every move. Her left interior rib cage felt tender and painful to touch and she began to have a harder and harder time breathing. And then it hit her - these were all symptoms that she had right before her diagnosis last year.
It took a lot of advocating to get the tests that she needed, and when the results of her bone marrow biopsy came in; her family's fears were confirmed. She relapsed.
Luckily, she caught it early this time. Luckily, her family had time to shore up things like the greenhouse, cook meals from the garden before she is not allowed to eat certain foods, and to spend time with loved ones before heading deep into chemo again to prepare her body for a bone marrow transplant.
When she stops for a second and allow herself to soak in the reality that her cancer is back, she's doubled over and hyperventilating in fear. She's terrified. The transplant process is long and arduous, and will keep her family away from home for a year.
On Parenting with Cancer:
Having a toddler while being sick has had its own extreme challenges. At first, Ryan fixated on the fact that Kalen might not remember any of this and that gave her some relief. She didn't want him to remember days where she couldn’t get out of bed, being physically ill, not being able to get on the floor and play with him and not taking him outside like she used to.
After talking with other moms that have cancer, she realized that there is a huge gift that she can give Kalen, much more than others can give him. She can give him the gift of vulnerability, and show him strength in vulnerability. By watching his mama struggle, he watches her be stronger than imaginable. She hopes that it will allow him to develop empathy for others that he sees struggling in the future. She hopes that it allows him to be gentler on himself when he struggles in the future. Now, she hopes that he remembers this. She hopes that he uses the experiences of seeing his mom at her worst to go do good in the world. And she hopes that he remembers the community that came to support him and his family in their time of great need and provides that kind of love and support to others when he's able to, someday.
Someday, she hopes to be back to her normal self and be able to run around with him outside. Someday, she’ll be able to chase him around the neighborhood on his bike. Someday she will be the parent that she wants to be again. But for now she has to be OK with the small victories of being able to prepare a healthy meal, reading him books, and pouring her affection all over him so that he knows how much his mama loves him and how hard she’s been fighting for him.
Ryan's Greatest Warrior:
Her son owns her heart, no question. But he was born out of the deep, enduring love that she has for Kevin. If Ryan is being honest with herself, her husband is the fiercest warrior in their cancer battle - much more fierce than she is. What she endures is nothing compared to what he juggles to keep being an absolutely incredible father, a devoted husband, an admired professional, AND as a nurse, a chef, a cleaning crew, a therapist, a mechanic... all of it. Over the past 18 months, she's done one thing - stay alive - while Kevin has been fulfilling all of these roles and more. Her heart swells with gratitude to know that her husband worked incredibly hard to keep their family afloat. What Ryan wants for everyone, if you haven’t already, is to find yourself a fierce warrior who loves you with everything that they’ve got and will be by your side no matter what. You deserve nothing less.
Co-organizers (3)
Shelly Poe
Organizer
Houston, TX
Ryan Griffith
Beneficiary
Jenny Madsen
Co-organizer
Paula Taylor
Co-organizer