Dug's BMT-related expenses
Donation protected
In March of 2016, Doug, AKA "Dug", underwent a bone marrow transplant to halt progression of cerebral Adrenoleukodystrophy. (Check out our blog at www.lifeasabarnes.wordpress.com for the full back story.) As of June, Dug is doing great. His counts continue to increase, and he remains out of the hospital with no major complications.
At this time, all medical costs are covered. Prior to the transplant I had the opportunity to enroll my kids in my work health plan. Between this and a secondary Medicaid insurance policy, all hospital, doctor, and prescription costs are covered. This primary policy does add $200 to our household expenses, but it's far cheaper than a transplant.
We have also been fortunute to have lots of friends and family help us so far. I thought I would be able to manage once I was back home, but I still cannot work as many hours as I did pre-transplant. Doctor appointments take a minimum of three hours one day a week. If he needs tranfusions or anything else for that week, it can take an entire day.
There are also expenses that are not covered like a large portion of the travel costs back and forth to Minnesota. At the end of June, we have to spend three days for Day +100 follow-up appointments. If a room isn't available at the Ronald house, we will need to stay in a hotel. Keeping a clean home is also critical, but that means additional cleaning costs, air purifiers, etc.
Dug's quality of life has been changed because he cannot interact with his classmates. We've tried numerous times to connect over the web, but the school year is coming to a close and everyone will be going their separate ways. I'm hoping to enroll Dug in some online camps for coding and other computer skills while giving him some regular interaction with his peers.
We do not need all the funds at once, but rather plan to use this to supplement my income so I can focus more on what I need to. When I'm at work, I worry about home. When I'm at home, I worry about work. Knowing that I don't have to worry as much about either one will allow me the opportunity to focus on each when I need to.
Thank you for your help in our journey. Ours is difficult, but not nearly as difficult as some of our other ALD families. If we receive more than we can use, we will use it for other ALD families or give back to the Ronald McDonald house in Minnesota.
At this time, all medical costs are covered. Prior to the transplant I had the opportunity to enroll my kids in my work health plan. Between this and a secondary Medicaid insurance policy, all hospital, doctor, and prescription costs are covered. This primary policy does add $200 to our household expenses, but it's far cheaper than a transplant.
We have also been fortunute to have lots of friends and family help us so far. I thought I would be able to manage once I was back home, but I still cannot work as many hours as I did pre-transplant. Doctor appointments take a minimum of three hours one day a week. If he needs tranfusions or anything else for that week, it can take an entire day.
There are also expenses that are not covered like a large portion of the travel costs back and forth to Minnesota. At the end of June, we have to spend three days for Day +100 follow-up appointments. If a room isn't available at the Ronald house, we will need to stay in a hotel. Keeping a clean home is also critical, but that means additional cleaning costs, air purifiers, etc.
Dug's quality of life has been changed because he cannot interact with his classmates. We've tried numerous times to connect over the web, but the school year is coming to a close and everyone will be going their separate ways. I'm hoping to enroll Dug in some online camps for coding and other computer skills while giving him some regular interaction with his peers.
We do not need all the funds at once, but rather plan to use this to supplement my income so I can focus more on what I need to. When I'm at work, I worry about home. When I'm at home, I worry about work. Knowing that I don't have to worry as much about either one will allow me the opportunity to focus on each when I need to.
Thank you for your help in our journey. Ours is difficult, but not nearly as difficult as some of our other ALD families. If we receive more than we can use, we will use it for other ALD families or give back to the Ronald McDonald house in Minnesota.
Organizer
Dani Barnes
Organizer
Ankeny, IA