#MightyMaryn Clinical Trial Fund
Donation protected
Thank you for reading Maryn’s story. Maryn (aka #MightyMaryn) is my fierce 7 year-old niece battling glioblastoma, stage IV brain cancer.
For those of you who have followed Maryn’s journey on Caring Bridge, you know that she is determined and resilient – she has learned to swallow pills so she could take her chemo, endured a tight mask and learned to lay still for 20 minutes at a time to avoid sedation during her 6 weeks of daily radiation treatments, attended ½ days of first grade while in treatment, embraced fashion bandanas and hats as she lost her hair, and managed the loss of vision on her right side which resulted from the brain surgery. She also keeps all of us in better spirits with her humor and heart. Maryn is an amazing kid who loves sports, art, camping, movies with popcorn, and playing with her big sister.
Photo by: Keyana Tahmaseb http://www.keyanatahmaseb.com/
The highlight video is from very special events with the Portland Thorns FC. We are eternally grateful to the Thorns for these amazing events that allowed us to celebrate Maryn 7th birthday with friends and family! It was also a celebration of the completion of the intense six weeks of travel to and from Doernbecher for 30 radiation treatments, and the completion of her daily chemo treatments.
Maryn’s family…
Chrissy and Graham both work for school districts. Chrissy is an Administrator, working with federal programs in Woodburn and Graham is on the Behavior Cadre working with high-need kids in classrooms throughout Salem. Cora, Maryn’s big sister, is an avid soccer player and will start middle school in the fall.
How it began…
Maryn, a normally high-spirited and lively 6 year-old, became sick and spent all day Thursday, March 15th, in a deep sleep. The next day, Chrissy and Graham took her to the doctor, where the doctor quickly recommended Maryn go to the ER for a full work up to include a cat scan, chest x-ray and blood work. The results showed a brain hemorrhage and the decision was made to send her via life flight to Doernbecher Children’s Hospital in Portland.
Upon arrival, things moved quickly, MRIs and CT scans were administered, and a massive tumor was detected in the left side of her brain. The doctors performed emergency surgery (around 1am Saturday) to relieve the pressure in her brain, knowing a second brain surgery would be necessary within days.
On Tuesday, March 20th, Maryn spent the day in brain surgery, where the surgical team resected about 98% of the 6 cm tennis ball sized tumor. By the end of the week, she was released from the hospital to begin recovering and regaining her strength at home.
On Thursday, March 29th, Maryn’s family received the pathology reports, and Maryn was diagnosed with Glioblastoma, Stage IV brain cancer. This is a very aggressive form of brain cancer that creates tumors at a rapid rate, and is incredibly rare in children. While the surgeon was able to remove the visible tumor, likey some micro cells remain in her brain tissue.
What followed was a course of treatment that included 6 weeks of radiation and 6 weeks of daily chemo (which she managed to complete 5 weeks before her platelets fell too low to continue). Maryn also receives occupational therapy and sees vision specialists at Casey Eye Institute. The family is fortunate to have a world-class hospital in Doernbecher Children’s, just 45 miles away, with both Chrissy and Graham’s parents there to share in the drives to Portland for her treatments.
Why are we asking for support today?
There currently is no cure for glioblastoma, but there is research taking place around the world. The standard treatment typically keeps the cancer from coming back for about 15 months, but doctors have been clear that at that point this type of cancer always comes back and the options at that point are limited.
There are many clinical trials providing hope, and the family has decided to participate in a clinical trial in New York City. The family will embark on a course of treatment that may span up to two years, requiring Maryn and family to travel between Salem, OR, and New York City every three weeks.
The entire family will be in New York for up to four weeks to start the trial (starting July 29th), and then begin the three week travel cycle for Maryn’s one day of blood work and treatments, which also require her to be in NYC.
It sounds like the clinical trial chemo has minimal side effects, so hopefully Maryn will feel good enough to play sports, go to school and play with her friends. It will be tough traveling that much, but the hope is the clinical trial is more effective than the standard treatment.
The costs…
Maryn’s family is fortunate to have a good health care plan that allows her top-notch care, but treatments outside of Oregon fall under out-of-network care. During the clinical trial, the medications will be covered; however, the doctor visits and other hospital costs will fall under their out-of-network medical costs, and the travel will be the responsibility of the family as well.
There will be many financial hurdles in the coming months and years, including travel and medical costs and lost wages resulting from taking time off for Family Medical Leave. The first focus is on helping the family cover travel expenses and out-of-network medical costs. If we exceed this goal, money will go toward helping cover lost wages Chrissy and Graham incur during the coming years.
Goal - $100,000 for travel costs and medical out-of-network deductibles for the next 24 months. This will include the initial 3-4 week stay in NY, with 30+ additional trips over the next two years. Below are some of the key expenses the family faces.
$26,000 – Out-of-network deductible - $13,000/year
30+ trips to NY –
$50,000 for plane tickets (30 plane tickets for Maryn, plus 50+ tickets for other family members)
$12,000 for hotel rooms (The family will spend 80+ nights in NYC, staying at the Ronald McDonald when possible. This will help cover 40+ nights of hotels if needed)
$7,500 for travel between their home in Salem, OR, and the Portland airport & NYC airports and hotels/Ronald McDonald House, airport parking, and travel within NY for hospital visits (airport parking, Lyfts in NY)
Additionally, Graham and Chrissy will face lost wages as their sick leave from work is depleted. Maryn’s treatments fall mid-week, so each trip will result in about three days away from work.
How you can help…
We appreciate everyone following Maryn’s Caring Bridge page and supporting her journey. Thank you for donating to Maryn’s medical journey and for sharing her story. To help us get the word out, you can share my link on your Facebook, Twitter, Instagram, other social media or email.
Some of you may have other options for support through frequent traveler programs – aka free airline tickets, hotel points – or gift cards for Lyft, etc. I did reach out to several airlines, and there do not seem to be programs to donate miles to individuals without incurring standard transfer of mileage fees; however, the airlines recommended anyone with enough miles to purchase a ticket can purchase it for one of the family members without the transfer fees. For any of these or other options, you can reach out to me (Stacy) personally.
Here is a link to a wonderful story by the Portland Thorns FC:
#MightyMaryn
Thank you!
Photo by: Keyana Tahmaseb http://www.keyanatahmaseb.com/
For those of you who have followed Maryn’s journey on Caring Bridge, you know that she is determined and resilient – she has learned to swallow pills so she could take her chemo, endured a tight mask and learned to lay still for 20 minutes at a time to avoid sedation during her 6 weeks of daily radiation treatments, attended ½ days of first grade while in treatment, embraced fashion bandanas and hats as she lost her hair, and managed the loss of vision on her right side which resulted from the brain surgery. She also keeps all of us in better spirits with her humor and heart. Maryn is an amazing kid who loves sports, art, camping, movies with popcorn, and playing with her big sister.
Photo by: Keyana Tahmaseb http://www.keyanatahmaseb.com/ The highlight video is from very special events with the Portland Thorns FC. We are eternally grateful to the Thorns for these amazing events that allowed us to celebrate Maryn 7th birthday with friends and family! It was also a celebration of the completion of the intense six weeks of travel to and from Doernbecher for 30 radiation treatments, and the completion of her daily chemo treatments.
Maryn’s family…
Chrissy and Graham both work for school districts. Chrissy is an Administrator, working with federal programs in Woodburn and Graham is on the Behavior Cadre working with high-need kids in classrooms throughout Salem. Cora, Maryn’s big sister, is an avid soccer player and will start middle school in the fall.
How it began…
Maryn, a normally high-spirited and lively 6 year-old, became sick and spent all day Thursday, March 15th, in a deep sleep. The next day, Chrissy and Graham took her to the doctor, where the doctor quickly recommended Maryn go to the ER for a full work up to include a cat scan, chest x-ray and blood work. The results showed a brain hemorrhage and the decision was made to send her via life flight to Doernbecher Children’s Hospital in Portland.
Upon arrival, things moved quickly, MRIs and CT scans were administered, and a massive tumor was detected in the left side of her brain. The doctors performed emergency surgery (around 1am Saturday) to relieve the pressure in her brain, knowing a second brain surgery would be necessary within days.
On Tuesday, March 20th, Maryn spent the day in brain surgery, where the surgical team resected about 98% of the 6 cm tennis ball sized tumor. By the end of the week, she was released from the hospital to begin recovering and regaining her strength at home.
On Thursday, March 29th, Maryn’s family received the pathology reports, and Maryn was diagnosed with Glioblastoma, Stage IV brain cancer. This is a very aggressive form of brain cancer that creates tumors at a rapid rate, and is incredibly rare in children. While the surgeon was able to remove the visible tumor, likey some micro cells remain in her brain tissue.
What followed was a course of treatment that included 6 weeks of radiation and 6 weeks of daily chemo (which she managed to complete 5 weeks before her platelets fell too low to continue). Maryn also receives occupational therapy and sees vision specialists at Casey Eye Institute. The family is fortunate to have a world-class hospital in Doernbecher Children’s, just 45 miles away, with both Chrissy and Graham’s parents there to share in the drives to Portland for her treatments.
Why are we asking for support today?
There currently is no cure for glioblastoma, but there is research taking place around the world. The standard treatment typically keeps the cancer from coming back for about 15 months, but doctors have been clear that at that point this type of cancer always comes back and the options at that point are limited.
There are many clinical trials providing hope, and the family has decided to participate in a clinical trial in New York City. The family will embark on a course of treatment that may span up to two years, requiring Maryn and family to travel between Salem, OR, and New York City every three weeks.
The entire family will be in New York for up to four weeks to start the trial (starting July 29th), and then begin the three week travel cycle for Maryn’s one day of blood work and treatments, which also require her to be in NYC.
It sounds like the clinical trial chemo has minimal side effects, so hopefully Maryn will feel good enough to play sports, go to school and play with her friends. It will be tough traveling that much, but the hope is the clinical trial is more effective than the standard treatment.
The costs…
Maryn’s family is fortunate to have a good health care plan that allows her top-notch care, but treatments outside of Oregon fall under out-of-network care. During the clinical trial, the medications will be covered; however, the doctor visits and other hospital costs will fall under their out-of-network medical costs, and the travel will be the responsibility of the family as well.
There will be many financial hurdles in the coming months and years, including travel and medical costs and lost wages resulting from taking time off for Family Medical Leave. The first focus is on helping the family cover travel expenses and out-of-network medical costs. If we exceed this goal, money will go toward helping cover lost wages Chrissy and Graham incur during the coming years.
Goal - $100,000 for travel costs and medical out-of-network deductibles for the next 24 months. This will include the initial 3-4 week stay in NY, with 30+ additional trips over the next two years. Below are some of the key expenses the family faces.
$26,000 – Out-of-network deductible - $13,000/year
30+ trips to NY –
$50,000 for plane tickets (30 plane tickets for Maryn, plus 50+ tickets for other family members)
$12,000 for hotel rooms (The family will spend 80+ nights in NYC, staying at the Ronald McDonald when possible. This will help cover 40+ nights of hotels if needed)
$7,500 for travel between their home in Salem, OR, and the Portland airport & NYC airports and hotels/Ronald McDonald House, airport parking, and travel within NY for hospital visits (airport parking, Lyfts in NY)
Additionally, Graham and Chrissy will face lost wages as their sick leave from work is depleted. Maryn’s treatments fall mid-week, so each trip will result in about three days away from work.
How you can help…
We appreciate everyone following Maryn’s Caring Bridge page and supporting her journey. Thank you for donating to Maryn’s medical journey and for sharing her story. To help us get the word out, you can share my link on your Facebook, Twitter, Instagram, other social media or email.
Some of you may have other options for support through frequent traveler programs – aka free airline tickets, hotel points – or gift cards for Lyft, etc. I did reach out to several airlines, and there do not seem to be programs to donate miles to individuals without incurring standard transfer of mileage fees; however, the airlines recommended anyone with enough miles to purchase a ticket can purchase it for one of the family members without the transfer fees. For any of these or other options, you can reach out to me (Stacy) personally.
Here is a link to a wonderful story by the Portland Thorns FC:
#MightyMaryn
Thank you!
Photo by: Keyana Tahmaseb http://www.keyanatahmaseb.com/Organizer and beneficiary
Stacy Maloney
Organizer
Salem, OR
Christina Chapman
Beneficiary