I used to participate a lot on Daily Kos. I joined a long, long time ago, and found many wonderful online friends through this blog.
I used to be an activist. I used to be a student at DePaul University in Chicago. I used to be a writer, and I used to work "almost" full time at my local library. I used to speak at political events, and emcee many of them.
I used to do - and be - a lot of things.
On August 26, 2013, that all changed. Everything I used to do, everything I used to be, slammed to a halt. There are moments in life like that, demarcation events that divide your life into "before" and "after." My son, who had been feeling oddly tired for a week or so, went for a checkup. He'd overcome many struggles - significant learning disabilities - to graduate from Columbia College and had just been hired to do some behind the scenes filming and editing on a local independent film project. He went to the doctor for a physical on Friday afternoon to figure out why he'd been winded so easily, and felt so fatigued. On Saturday morning, every phone we owned was ringing. The doctor himself was calling - never a good sign. He sounded shaken. My son's white blood cell count was 147,000. His other blood counts were equally atrocious. "He needs to get to a hospital- NOW."
It's not possible to explain, as a parent, how such a phone call makes you feel. You either have experienced this, and understand, or have not. We rushed our son to the hospital, where he was diagnosed with AML, acute myelogenous leukemia. He began chemo almost immediately, and went into remission. But most people with AML achieve remission - and most relapse. Genetic testing revealed he fell into the "intermediate" risk group and needed a bone marrow transplant. There were many twists and turns getting him to transplant. His heart had been damaged by the initial chemo, which is very toxic. We lost his first donor due to a timing issue. He had to change hospitals. But finally, he got his transplant, on Feb. 13, 2014. It has been a long and brutal road back for him; AML patients become neutropenic from the treatment (that is, they have severely compromised immune systems and are at extremely high risk for infections that can kill them) and cannot work. Bone marrow transplants require a full time caregiver. Neither my son nor I could continue working and the past 15 months has been a roller coaster ride from hell. But he's doing well and has clawed his way, inch by inch, back into his life. He still is not cleared to work. It's not certain when he will be. He gets $450 a month from disability, which mostly goes to pay his insurance premium.
My son was living at home with my husband, daughter, and me. A few years ago, our basement flooded. We made a claim on our insurance to get some repairs made, and our insurance company cancelled our flood coverage. It turns out that the repairs did not remove all the mold. People with compromised immune systems cannot live in a place with mold (no one should). So my son and I had to move in with my elderly parents, away from my husband and daughter. Our significantly reduced income meant that we could not hire contractors to do the work and have slowly been trying to do it ourselves. We tore the basement down to studs and hauled everything out to the rented dumpster. We did have to hire a contractor to repair the crack in the foundation that was causing the flooding. Between that and the medical bills ($2 million and counting - though insurance covers much, what is not covered is enough to bankrupt many) we are finding it hard to purchase materials to finish our home so our son can, finally, come home.
So, reluctantly, I'm asking for help. I've already asked the county (none available) and various other charitable organizations. There has been virtually no help available from any sources. I set up a "Go fund me" page for our home repairs. If you can help or share this story with someone who can, we'd be most grateful. We just want to bring our son home. It's been a long and difficult battle and he has been amazing. Through it all - including chemo so toxic that it left him with sores all along the digestive mucosa, made his hair fall out (twice - as soon as it grew back he needed more chemo) and almost a year in near total isolation to protect him from illnesses during treatment (a bone marrow transplant wipes out all your vaccinations as well) - he's never complained. He just wants to go home.
Maybe one day I can go back to doing the things I used to do, too. I hope so. But for now, I just want to go home too. I want my son to resume the life of a young adult, and I want to be able to live with my other child and husband again. It's hard, turning to strangers - or anyone, for that matter - for help. I used to help raise money for others in need, just as I used to do and be a lot of things. But one phone call changed everything. For right now, I'm barely "me" - I'm a mother who has spent the past 15 months trying to save her son's life. He is doing well. We have been blessed. And now, we just want to go home, and are trying to raise funds to purchase the drywall and flooring we need to make that hope a reality. If you can help in any way, I can only promise it will be paid forward, as best as I can.
Here is our son's "Go Fund Me" page: http://www.gofundme.com/...