Help Joe Stay With Us

Hi. My name is Jennifer and I'm raising funds to help my husband, Joe, fight Myelofibrosis - a rare form of Leukemia.

The quick version: Joe was recently diagnosed and he's in the earlier stages of the disease. The doctor told us that he is responding well to the medication. So IF he stays on the medication for the rest of his life, and IF he doesn't develop side effects, the medication should probably arrest the progress of the disease enough for him to live most of his normal lifespan.
The problem  is that the medication is crazy expensive ($12,000/month) and we have no way to pay for it.  The copay alone is over $2,700 a month. But we're both disabled and don't make anywhere near that amount. We've applied for all the social programs we can, but so far we haven't found anything  that will cover the cost of the drug.
Plus, there are a lot of other medical costs now and we're starting to struggle with basic living costs. So we're asking for your donations to help (well, I'm asking because he's used to being the one who helps everybody else and never thinks to ask others to help him).

The longer version:
Joe is the best human being I’ve ever met  and the love of my life. I can’t imagine life without him. When we met, the kids and I were still struggling from my previous husband’s death. Joe was widowed too. And being together allowed us to provide each other with the strength, love and support we all needed to heal and move on. The kids even asked him to adopt them and become their forever dad!

First, let me tell you a little about Joe: He sometimes reminds me of a really smart golden retriever. Yes, he might dig holes in the yard (with an excavator), but he's always upbeat, kind and good to everybody he meets. And unlike a golden retriever, he always fixes the holes he digs, lol. He’s worked and played outside all of his life, and he's always been super strong and healthy. His favorite place in the world is camping by the lake, listening to the loons.
He was raised on a farm so he can do anything. We don't buy a lot of stuff because he just finds an old piece of junk and turns it into whatever we need. In fact, every time he invents things like that, I joke that he's “MacGuyver Joe”.

He is extremely hard-working, volunteers, and teaches his skills to anyone who wants to know. He will give the shirt off his back to help anybody, and the neighbors know they can always count on him to lend a helping hand.

Only now it’s his turn to be on the side of needing help. And since he’s always the one who gives, he never thinks to ask others for help. But I don't have any problem asking people on his behalf because he's wonderful and he needs to stay around for a long, long time. 

The back story: Several years ago, Joe had surgery and radiation to remove a tumor on his neck. The post-surgery radiation damaged his carotid artery and the jaw bones on his right side. The damage to his carotid caused him to have a stroke later on which took away most of his vision, but didn’t cause any other problems.

But, he didn't let a little thing like near-blindness stop him! His biggest frustration was that he couldn't work as quickly and easily any more. But when he recovered, he went outside and built a 50’ by 72’ by 24’ metal building. He had help with the foundation and the roof, but he did the rest by himself. He was slower, and he had to tie a rope to the house at first so he wouldn’t get lost, but he got the job done and it looked like a professional did it. I was so proud of him! He knew that if he allowed himself to sit around the house and mope, that it would be the end of him. So, he jumped right back into working outdoors just as soon as he could.

Then, about 4 years ago, the doctors found that Joe has a gene mutation – possibly caused by the radiation. Between medical bills and the loss of Joe's income, we had to move to a rural area for the lower cost of living. Unfortunately between being in a rural area, and Covid, it took us a while to find proper medical care. So now the mutation has progressed to Myelofibrosis. And, even though it has slowed him down, he still gets up early every day to go outside and work as much as he can.

Myelofibrosis scars and damages the bone marrow. And without treatment, the bone marrow starts losing the ability to make healthy blood cells, which causes all kinds of issues. Some of the issues are painful, and some will greatly decrease the quality, and years, of Joe's life if he doesn't get treatment.

Thankfully, this is one of the cancers that does have treatment that can hopefully slow the progression of the disease and give him a normal lifespan. However, the treatment is extremely expensive and we can't afford it. The primary drug alone has a $2,700 monthly copay. That is much higher than our income. Plus, he has to be on it for the rest of his life.
We were able to get a grant to help with the first couple of months. But that money will run out next month and we have no way to pay for it after that.

And the expenses don't stop at the drug treatment. There are upcoming surgeries, a potential bone marrow transplant, travel to and from the cancer center, temporary housing costs, therapies, and dozens of other expenses people never know about when we’re healthy.

Last year my disability got to the point that I lost my jobs and I can’t help with income any more. So, that leaves us with only Joe’s social security income and we’re starting to struggle with paying basic living expenses.

As you can probably tell with someone like Joe, he is more concerned about taking care of me and the finances are worrying him. He has always provided for his family and he keeps trying to find ways to make money instead of just focusing on getting better.

This disease is hard enough to fight, and he needs to stay on top of things in order to win. So far he’s doing pretty well on the new treatments. And if we can get the financial worries out of the way, he should be able to win this thing.

 

My hope is that you will donate to help Joe stay focused on winning this fight. That way he can continue to make everyone’s life better and be a blessing to the community.

 

Please join me in supporting Joe as he focuses on beating this cancer. Even if you do not donate, please take a minute to consider donating your bone marrow or blood stem cells to save someone’s life. If you are between the ages of 18-44, please sign up at https://my.bethematch.org/.

 

Some of the things your donation will help fund:

 

Medication and therapies.

A bone marrow transplant if he qualifies.

Surgery to fix his radiated jaws/teeth and stop the constant infections.

Speech therapy and new teeth after the surgery.

A new bed to help with the pain caused by the disease.

Travel to and from the cancer treatment centers.

Treatments for complications from the disease

Doctor visits, tests, etc.

Living Expenses