- D
During most of 2018, Mark hadn't felt very well. When he finally went to get some blood work done, he was told to go to the ER right away for a transfusion. Since then, Mark has had several blood and platelet transfusions. He was eventually told he would start chemo and have to have a stem cell transplant. But for several weeks, no one knew his exact diagnosis, which was quite scary.
Mark was eventually diagnosed with a rare blood cancer called Pure Erythroid Leukemia (PEL), which is a rare form of Acute Myeloid Leukemia (AML). The University of Michigan sees about 140 AML patients each year, and only 1 or 2 of them have PEL.
To start things off, Mark had several appointments at Mott’s Children's Hospital at the University of Michigan. It was mostly to determine and discuss the exact diagnosis and then develop a plan. His test results were sent to Mayo Clinic to confirm the diagnosis. The treatment is aggressive.
Decitabine was given at his first 10 day admission. They will continue that treatment for 2-3 months. Then when they find a stem cell donor, he will be admitted for 4-8 weeks. The first 6 days will consist of intensive myloablative chemotherapy, then the stem cell transplant will take place.
The first 100 days following that, he must stay close to the hospital and have a caregiver with him 24/7 with no driving, no going in public, no visitors under 12, no raw foods, no well water, and the list of "nos" goes on and on. He cannot go back to work until at least a year after the stem cell transplant.
During his first 10 day admission, Mark had no negative side effects from the treatment. His appetite was good. He is on 3 different medications, Decitabine for 10 days (a 60 minute transfusion every day for 10 days), then 2 other, Cresemba and Venclexta, for the next 4 weeks. Plus he must take anti-viral, anti-fungal, and anti-bacterial meds for prevention. A 3rd bone marrow biopsy will be done at the end of Cycle 1 to see if progress has been made! Cycle 2 will start on December 12th or 13th (regardless of 3rd biopsy results) so he can be out before Christmas Eve!
We're still not sure whether he will be able to have treatment locally for round 2, but hoping for it to turn out that way!
Mark does not have short-term disability. And the insurance company is, of course, trying to deny much of his medical costs already. There are already thousands of dollars worth of co-pays due because of insurance denials. And Mark and his wife, Stephanie, are still trying to find ways to get help. They are also working on getting long-term disability. The paperwork has been completed.
Basically, they have very little money coming in, but plenty that has to go out. Stephanie is starting a new job that is 20 hours a week. Though that will help with some of the expenses, it won't be nearly enough. She can only work part-time, as she has to make sure she can get Mark to and from his many appointments and treatments.
As of now, Mark will probably be off of work until a year following his stem cell transplant.
So far, the GoFundMe money raised has been used for home and living expenses such as heat, electric, water, food, gas, house taxes and medical treatment denied by the insurance company. It has also been used to replace their 14-year old refrigerator, which finally quit working.
A message directly from Mark:
"I write this to thank basically everybody for the prayers, the good vibes, and even those just thinking about me and my family in positive ways. The gift cards, the cash and donations to our GoFundMe account, and believe it or not, even free firewood delivered to my house have been so incredibly humbling that even as I write this, I become emotional and am tearing up. I have truly never asked anybody for anything (except for my parents), yet so many of you have been so willing to give to us that my heart is overwhelmed. ...and now I learn that my family has been adopted this Christmas by the letter carrier union branch 246 in Kalamazoo. Are you kidding me?
I've opened up in a way I rarely do here, and before I get too much more sentimental and sappy I want you to know it is because of ALL of you! As I once again fight back my tears, I thank everyone for everything you've done and continue to do for me and my family as we figure out how to navigate this season of our life. We could not be any more appreciative than we are for the outpouring of goodness from everybody. Together with your love and support, I know I will survive this and be as good as or better than before. With God’s hand planted directly in the middle, I look forward to being the success story that inspires others."
Please consider helping during this most difficult time.
Mark was eventually diagnosed with a rare blood cancer called Pure Erythroid Leukemia (PEL), which is a rare form of Acute Myeloid Leukemia (AML). The University of Michigan sees about 140 AML patients each year, and only 1 or 2 of them have PEL.
To start things off, Mark had several appointments at Mott’s Children's Hospital at the University of Michigan. It was mostly to determine and discuss the exact diagnosis and then develop a plan. His test results were sent to Mayo Clinic to confirm the diagnosis. The treatment is aggressive.
Decitabine was given at his first 10 day admission. They will continue that treatment for 2-3 months. Then when they find a stem cell donor, he will be admitted for 4-8 weeks. The first 6 days will consist of intensive myloablative chemotherapy, then the stem cell transplant will take place.
The first 100 days following that, he must stay close to the hospital and have a caregiver with him 24/7 with no driving, no going in public, no visitors under 12, no raw foods, no well water, and the list of "nos" goes on and on. He cannot go back to work until at least a year after the stem cell transplant.
During his first 10 day admission, Mark had no negative side effects from the treatment. His appetite was good. He is on 3 different medications, Decitabine for 10 days (a 60 minute transfusion every day for 10 days), then 2 other, Cresemba and Venclexta, for the next 4 weeks. Plus he must take anti-viral, anti-fungal, and anti-bacterial meds for prevention. A 3rd bone marrow biopsy will be done at the end of Cycle 1 to see if progress has been made! Cycle 2 will start on December 12th or 13th (regardless of 3rd biopsy results) so he can be out before Christmas Eve!
We're still not sure whether he will be able to have treatment locally for round 2, but hoping for it to turn out that way!
Mark does not have short-term disability. And the insurance company is, of course, trying to deny much of his medical costs already. There are already thousands of dollars worth of co-pays due because of insurance denials. And Mark and his wife, Stephanie, are still trying to find ways to get help. They are also working on getting long-term disability. The paperwork has been completed.
Basically, they have very little money coming in, but plenty that has to go out. Stephanie is starting a new job that is 20 hours a week. Though that will help with some of the expenses, it won't be nearly enough. She can only work part-time, as she has to make sure she can get Mark to and from his many appointments and treatments.
As of now, Mark will probably be off of work until a year following his stem cell transplant.
So far, the GoFundMe money raised has been used for home and living expenses such as heat, electric, water, food, gas, house taxes and medical treatment denied by the insurance company. It has also been used to replace their 14-year old refrigerator, which finally quit working.
A message directly from Mark:
"I write this to thank basically everybody for the prayers, the good vibes, and even those just thinking about me and my family in positive ways. The gift cards, the cash and donations to our GoFundMe account, and believe it or not, even free firewood delivered to my house have been so incredibly humbling that even as I write this, I become emotional and am tearing up. I have truly never asked anybody for anything (except for my parents), yet so many of you have been so willing to give to us that my heart is overwhelmed. ...and now I learn that my family has been adopted this Christmas by the letter carrier union branch 246 in Kalamazoo. Are you kidding me?
I've opened up in a way I rarely do here, and before I get too much more sentimental and sappy I want you to know it is because of ALL of you! As I once again fight back my tears, I thank everyone for everything you've done and continue to do for me and my family as we figure out how to navigate this season of our life. We could not be any more appreciative than we are for the outpouring of goodness from everybody. Together with your love and support, I know I will survive this and be as good as or better than before. With God’s hand planted directly in the middle, I look forward to being the success story that inspires others."
Please consider helping during this most difficult time.