Nates Journey Beating HLH
Donation protected
Hello,
Family, Friends, Loved Ones & all that have been following our 2019…
We started a CaringBridge page to keep everyone informed about Nate’s progress and treatments as we battle this disease that he has been struggling with since June. And we are connecting this GoFundMe page to help, with building cost of travel, medical expenses as well as lodging during the transplant process.
But before I begin, I want to say thank you. Our family is blessed to be surrounded by so many supportive people in our lives. From our parents, to our siblings, our friends, neighbors, relatives and so many more- this journey wouldn’t be possible without you all. Furthermore, we have so many amazing medical teams working with us from Avera in Sioux Falls to the Mayo Clinic in Rochester and we are confident we have finally found a road to treatment, which will put Nate in remission.
Keep praying, keep reminding us that it’s ok to ask for help, donate if you’re able to and please continue to love our Children. Our goal has been and will continue to be, to try to disrupt their lives as little as possible. It is so very hard for Audrina & Maizen to understand what has been happening to their father, and we ask you to not talk about this with them, because we want to keep it as simple as possible for them.
Lastly, we THANK YOU for everything that you have all done since June and we know with your love and support we will beat this TOGETHER.
Love,
Nate & Jillian
Our Journey began in June, 2019
After 4 months of hospital stays, one surgery, countless doctors’ visits and hundreds of test… Here’s where we are at today.
Nate is diagnosed with
A rare auto immune disorder, called Hemophagocytic Lymphohistiocytosis (HLH).
Cancer in his right Kidney (this was removed successfully in August)
Mass behind his right eye (this we’re still figuring out)
Now What
We are in the process of finding a bone marrow match, as Nate needs a bone marrow transplant. His two sisters will be tested first to see if they are a match. If they end up not being a match, the doctors will search for a match in the National Data Base. We have been told, this process can take up to 8 weeks.
Once a donor is found, Nate will be ready to receive his transplant.
After transplant, Nate will have to live in Rochester, MN for 90 days and is required to stay within 15 minutes of the hospital. We will either find a house to rent or stay in a hotel, as the hospital housing options do not allow children to stay; which is obviously not a good fit for our family.
During this time Nate will have daily visits to the hospital for follow up and blood testing, to assure his body is not rejecting the transplant.
Throughout our 90 day stay, Nate is required to have a 24 hour Caregiver. What does this mean? This person(s) has to stay with him, and basically hang out, keep him company & attend doctor’s appointments etc. We are being told that this can be family and/or a friend. We are grateful this isn’t something we have to hire out. Overall the reason for this, is transplant patients are not allowed to be alone during this time as they are at high risk for so many unknowns.
The Future
Upon a successful transplant and the 90 day vacation in Rochester we will be able to return home. We have been advised that it can take 6-9 months to fully recover and up to a year before Nate is released to go back to work. I feel like this is one of his biggest struggles. All of you know his passion for health and fitness and his independence with working and supporting his family, and he hasn’t be able to do either since June.
Where we are at today
We’re in the transplant process
Steroids
Receiving weekly chemotherapy infusions
Praying and looking forward to the day we can get back to our “normal” lives <3
Family, Friends, Loved Ones & all that have been following our 2019…
We started a CaringBridge page to keep everyone informed about Nate’s progress and treatments as we battle this disease that he has been struggling with since June. And we are connecting this GoFundMe page to help, with building cost of travel, medical expenses as well as lodging during the transplant process.
But before I begin, I want to say thank you. Our family is blessed to be surrounded by so many supportive people in our lives. From our parents, to our siblings, our friends, neighbors, relatives and so many more- this journey wouldn’t be possible without you all. Furthermore, we have so many amazing medical teams working with us from Avera in Sioux Falls to the Mayo Clinic in Rochester and we are confident we have finally found a road to treatment, which will put Nate in remission.
Keep praying, keep reminding us that it’s ok to ask for help, donate if you’re able to and please continue to love our Children. Our goal has been and will continue to be, to try to disrupt their lives as little as possible. It is so very hard for Audrina & Maizen to understand what has been happening to their father, and we ask you to not talk about this with them, because we want to keep it as simple as possible for them.
Lastly, we THANK YOU for everything that you have all done since June and we know with your love and support we will beat this TOGETHER.
Love,
Nate & Jillian
Our Journey began in June, 2019
After 4 months of hospital stays, one surgery, countless doctors’ visits and hundreds of test… Here’s where we are at today.
Nate is diagnosed with
A rare auto immune disorder, called Hemophagocytic Lymphohistiocytosis (HLH).
Cancer in his right Kidney (this was removed successfully in August)
Mass behind his right eye (this we’re still figuring out)
Now What
We are in the process of finding a bone marrow match, as Nate needs a bone marrow transplant. His two sisters will be tested first to see if they are a match. If they end up not being a match, the doctors will search for a match in the National Data Base. We have been told, this process can take up to 8 weeks.
Once a donor is found, Nate will be ready to receive his transplant.
After transplant, Nate will have to live in Rochester, MN for 90 days and is required to stay within 15 minutes of the hospital. We will either find a house to rent or stay in a hotel, as the hospital housing options do not allow children to stay; which is obviously not a good fit for our family.
During this time Nate will have daily visits to the hospital for follow up and blood testing, to assure his body is not rejecting the transplant.
Throughout our 90 day stay, Nate is required to have a 24 hour Caregiver. What does this mean? This person(s) has to stay with him, and basically hang out, keep him company & attend doctor’s appointments etc. We are being told that this can be family and/or a friend. We are grateful this isn’t something we have to hire out. Overall the reason for this, is transplant patients are not allowed to be alone during this time as they are at high risk for so many unknowns.
The Future
Upon a successful transplant and the 90 day vacation in Rochester we will be able to return home. We have been advised that it can take 6-9 months to fully recover and up to a year before Nate is released to go back to work. I feel like this is one of his biggest struggles. All of you know his passion for health and fitness and his independence with working and supporting his family, and he hasn’t be able to do either since June.
Where we are at today
We’re in the transplant process
Steroids
Receiving weekly chemotherapy infusions
Praying and looking forward to the day we can get back to our “normal” lives <3
Organizer
Nate Vortherms
Organizer
Spirit Lake, IA