Join Team Erin and Her War Against Cancer
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The Brief Story
In November 2016 severe headaches led to an MRI and then brain surgery to remove a tumor and receive the diagnosis of brain cancer for my loving wife, Erin. As a healthy mom of 3 school aged children, Erin approached her diagnosis with, what she described as, “a sense of peace.” I can attest that, although there have been valleys in this journey, Erin has smiled much and complained very little.
Quick Catch Up
Fast forward two years, after round 1 of radiation and chemo, 19 months cancer free, recurrence, round 2 of radiation and chemo, Erin is now entering into an immunotherapy research at the City of Hope in California (phase one CAR T-cell immunotherapy targeted at brain cancer). On short notice, we recently traveled to California to sign consent for research. While we were there, and in a miraculous way, an appointment opened up for Erin to have leukapheresis, during which, T-Cells are harvested from Erin’s blood so they can be re-programmed to recognize and destroy the cancer cells. This appointment opening saved us from a two month wait and another trip from Maryland.
In 2019, we will travel back to City of Hope so the re-programmed cells can be put back in to combat cancer cells. This next trip will be for a minimum of 3 weeks and may possibly last up to 6 weeks.
What You Can Do
The question has come up of how much this will cost. Quite honestly, I am not sure I know how much money this will cost. The research portion of the treatment is covered by City of Hope, but our understanding is they will charge insurance for lab work, diagnostic imaging, and other billable medical costs. So we will have co-pays and co-insurance to cover, along with room and board, additional back and forth travel, as needed, (i.e. Dave may come back and forth a couple of times for kids, work, etc).
At a minimum, here are rough costs that we have been able to identify for our next trip:
•Hotel ($125/night) between 21- 40 days
•Car ($250/week) between 3-6 weeks
•Flights ($200 - $300 each on average if booked far enough in advance otherwise $595 each)
Full disclosure, we have a gift card anonymously donated and someone who offered to donate some of their points. So, at a minimum, one flight out and back is covered for the two of us.
Selfishly, if I were to be honest, I would love to do some special things with Erin while we are there, like a treat for what she is going through (maybe a weekend in Catalina? Or a visit to the hot springs? A night or two at a beach resort? Or a day at the spa). I would also love to surprise her with a visit from her children. Being gone 11 days we were missing them. I am certain being gone 21 or more days she would love to have them come out to visit and do something fun with them in California.
Life is short, regardless of how many years it may last. Knowing this, we decided to enjoy the journey, no matter where it leads. We will not let cancer rob us of the love we have developed in our marriage or the gifts we have received, especially Hannah, Ava and Jackson.
Thank You
Over the past two years, many have helped taxi kids, cook meals, clean the house, drive Erin to and from appointments, cover some medical expenses, send us on a vacation, etc. And you all haven’t stopped there. As soon as we found out about this City of Hope research many asked about helping with upcoming; travel costs and donating travel points, covering hotel cost, a car to use while in LA, and the list goes on. You are all amazing! Thank you for all the prayers, love and support!
Additional stuff left out above:
In November 2016, Erin, 38 at the time, began experiencing severe headaches. Tylenol would dull the pain but did not fully get rid of the pain. Over a couple of weeks the pain continued to worsen. She began experiencing some nausea and a couple times some blurred vision. On November 16, 2016 an MRI showed a mass in her brain. She had surgery November 20, 2016 to remove the tumor and was diagnosed with brain cancer in December 2016. She was treated with 6 weeks of radiation (30 visits which ended February 2017) and chemo (ended October 2017). There were no signs of recurrence until September 2018, for which she was able to go back through radiation and chemo in November-December 2018. Now, Erin has entered a phase 1 research at the City of Hope in California. The research is to determine the effectiveness of specific types of immunotherapy on brain cancer.
Erin is a loving mother of 3 gorgeous children; Hannah (14), Ava (10), Jackson (7). She is the patient and loving wife of Dave (that’s me!). We have been married 18 wonderful years and this step in our journey has only strengthened our faith in Jesus and the bond that we share as a married couple.
In November 2016 severe headaches led to an MRI and then brain surgery to remove a tumor and receive the diagnosis of brain cancer for my loving wife, Erin. As a healthy mom of 3 school aged children, Erin approached her diagnosis with, what she described as, “a sense of peace.” I can attest that, although there have been valleys in this journey, Erin has smiled much and complained very little.
Quick Catch Up
Fast forward two years, after round 1 of radiation and chemo, 19 months cancer free, recurrence, round 2 of radiation and chemo, Erin is now entering into an immunotherapy research at the City of Hope in California (phase one CAR T-cell immunotherapy targeted at brain cancer). On short notice, we recently traveled to California to sign consent for research. While we were there, and in a miraculous way, an appointment opened up for Erin to have leukapheresis, during which, T-Cells are harvested from Erin’s blood so they can be re-programmed to recognize and destroy the cancer cells. This appointment opening saved us from a two month wait and another trip from Maryland.
In 2019, we will travel back to City of Hope so the re-programmed cells can be put back in to combat cancer cells. This next trip will be for a minimum of 3 weeks and may possibly last up to 6 weeks.
What You Can Do
The question has come up of how much this will cost. Quite honestly, I am not sure I know how much money this will cost. The research portion of the treatment is covered by City of Hope, but our understanding is they will charge insurance for lab work, diagnostic imaging, and other billable medical costs. So we will have co-pays and co-insurance to cover, along with room and board, additional back and forth travel, as needed, (i.e. Dave may come back and forth a couple of times for kids, work, etc).
At a minimum, here are rough costs that we have been able to identify for our next trip:
•Hotel ($125/night) between 21- 40 days
•Car ($250/week) between 3-6 weeks
•Flights ($200 - $300 each on average if booked far enough in advance otherwise $595 each)
Full disclosure, we have a gift card anonymously donated and someone who offered to donate some of their points. So, at a minimum, one flight out and back is covered for the two of us.
Selfishly, if I were to be honest, I would love to do some special things with Erin while we are there, like a treat for what she is going through (maybe a weekend in Catalina? Or a visit to the hot springs? A night or two at a beach resort? Or a day at the spa). I would also love to surprise her with a visit from her children. Being gone 11 days we were missing them. I am certain being gone 21 or more days she would love to have them come out to visit and do something fun with them in California.
Life is short, regardless of how many years it may last. Knowing this, we decided to enjoy the journey, no matter where it leads. We will not let cancer rob us of the love we have developed in our marriage or the gifts we have received, especially Hannah, Ava and Jackson.
Thank You
Over the past two years, many have helped taxi kids, cook meals, clean the house, drive Erin to and from appointments, cover some medical expenses, send us on a vacation, etc. And you all haven’t stopped there. As soon as we found out about this City of Hope research many asked about helping with upcoming; travel costs and donating travel points, covering hotel cost, a car to use while in LA, and the list goes on. You are all amazing! Thank you for all the prayers, love and support!
Additional stuff left out above:
In November 2016, Erin, 38 at the time, began experiencing severe headaches. Tylenol would dull the pain but did not fully get rid of the pain. Over a couple of weeks the pain continued to worsen. She began experiencing some nausea and a couple times some blurred vision. On November 16, 2016 an MRI showed a mass in her brain. She had surgery November 20, 2016 to remove the tumor and was diagnosed with brain cancer in December 2016. She was treated with 6 weeks of radiation (30 visits which ended February 2017) and chemo (ended October 2017). There were no signs of recurrence until September 2018, for which she was able to go back through radiation and chemo in November-December 2018. Now, Erin has entered a phase 1 research at the City of Hope in California. The research is to determine the effectiveness of specific types of immunotherapy on brain cancer.
Erin is a loving mother of 3 gorgeous children; Hannah (14), Ava (10), Jackson (7). She is the patient and loving wife of Dave (that’s me!). We have been married 18 wonderful years and this step in our journey has only strengthened our faith in Jesus and the bond that we share as a married couple.
Organizer
Erin Van Horne DiDonato
Organizer
Ellicott City, MD
