We know everything is in God's hands, but we need your HELP! Ashley is being attacked by evil, and the evil that Ashley faces is Dermatofibrosarcoma protuberans(DFSP), a very RARE type of skin cancer. https://rarediseases.info.nih.gov/diseases/9569/dermatofibrosarcoma-protuberans. #GivingTuesday
Ashley, as many of you know, is an AMAZING woman. She is not only the love of my life, but she hands down, saved me from MY darkest days. Ashley helps everyone she can, every chance she gets. Without ever taking concern for herself. She has kept her aunt sober for 4 1/2 years now and deals with her alcohol induced dementia every day, caring for her. All she wants to do is have a nice garden where she can help feed others and provide us with organic foods, start our nonprofit to help other veteran families and provide a safe space for Veteran's in crisis, and live life to the fullest with me, her children and grands, and the rest of her family and friends. She wants to start a wedding and event company, with a great friend, to help fund the nonprofit. Now, not only is this all being put on hold, she faces a battle we could not see coming. She has already started fighting this by changing her diet to an extremely healthy, raw, cancer-killing diet and using every natural item we can find to try to fight this naturally, but the softball sized lump on her shoulder is causing a lot of discomfort and pain, not to mention affecting her in other ways.
Ashley is uninsured, due to the Army improperly skipping the Medboard process in my discharge (we are still fighting this but would give her Tricare) and the Veterans Administration(VA) messing up her ChampVA coverage (pays up to 80%). She is now in a waiting period for her application to even be reviewed. They are currently looking at March applications, so we are looking at not having any type coverage until next April. We have just spoken to an insurance broker to attempt to get any type of insurance and what will cover her we can't afford to get. We have been paying for everything out of pocket since this appeared. Already the bills are becoming overwhelming, and match that with the waiting for any type of plan or information, like when she will have the surgery, is added stress that is definitly not needed. So, please allow me to tell you about how this came to be and ALL that Ashley has had to endure throughout the past couple of months.
At the end of May, Ashley noticed something new on the back of her right shoulder, a raised lump. She thinks smaller than a golf ball size. This lump appeared in the same area that a "cyst" was most of her life (numerous doctors looked at it and called it a cyst, since she was 12). While she was surprised by it, she basically wrote it off as a cyst. Ashley is very HOLISTIC and has tried to change her diet (even prior to finding the lump) and wanted to try some homeopathic treatments to try and make it shrink/go away. After a month or so of these treatments, the lump was not shrinking, so she was convinced that she was ready to have it looked at. Off to St. Mary's ER we go (Mid July). When we get back into the ER, The Dr (Nurse Practioner) Said, "WOW, that's big"(everyone does), and asked to take a photo to show his collegues. We agreed and off he went to discuss with his peers. He came back in a short bit, saying "OK! Let's Try to open it up". He then injects local anestisia (Lidocaine) into the lump. Ashley began complaining that her face was going numb, then she continued until it was full body numbness. It really freaked her out.They did not seem too concerned, and then they checked to see if she was having paralasyis, which she did not. The Dr. opened it up, only to put immediate pressure on it, looking around, as what I call, "frantically" and asked the nurse to go get the ER Doctor in charge. The doctor poked in, looked at it, told the NP to close it up, it was a lipomoma, and we needed to see a surgeon. They then released us with a halfway done suture job, and without even checking her chronically low blood pressure! The next day, the surgeon's administrator said we couldn't see the surgeon without a Primary Care physician referral, not the ER's, I guess. Ashley, doesnt have a primary care, so we called Medlink, because they accept CHAMPVA. Well, they couldnt find her number for the insurance, so we paid on a sliding scale. We saw a PA, and she said "WOW!", but she thought that a dermotoligist should be able to take care of it. She sent us to the Dermatologist. Let me add in here that Ashley had zero pain, just a lump, until we went to the ER. Then, it began growing rapidly and started causing pain after they cut it open. We finally get to see the dermatologist, who looks at it, says "WOW", and then says we need an Ultrasound to see if there is blood flow. We find and set up Ultrasound in Seneca, SC (Aug). The cheapest rate. We get the Ultrasound done, and the Dermatologist says there is blood flow, but you need a surgeon, she can't do it. So NOW, we are headed to General Surgery, where they see us, say "WOW" (by this time it's the size of a softball), and then state we need a CT scan to see if it is connected to muscle or anything. The next thing that happened, weirded us out at best, as our General surgeon said "We are moving you to a diffrent doctor here in the building", but wouldnt say why, give us a name, or anything. We only recieved a phone call 30 min later from "Dr. Griffin's office", to set up an appt. We then searched Piedmont Hospital to find out he is a "Oncologist Surgeon". SO, now worry has crept in fairly strong. We still had no idea what it was. We knew it wasn't a cyst, a lipoma, and the last description was a "mass". Dr. Griffin threw out a bunch of medical terms and different sarcomas, that just freaked us out even more. There are over 70 different sarcomas and most are rare. Ashley has a rare kind and hers is extremely rare. Since seeing the Oncologist, we have had an MRI, CT biopsy, and blood work done, in which they have now sent to the MAYO clinic, after finding that it is DFSP and how rare it is. DFSP, from what we understand, is a sarcoma (cancer) but it isn't something that she ate, didn't eat, took, or could have prevented (although she believes the period of her life that she wasn't so healthy aided in it developing). There is a change in the genes, either chromosome 17 or 22, that happens sometime after conception. Basically, Ashley has had this her whole life and didn't know it. I guess her body was strong enough to fight it off or something. They really haven't given us much information, which is really nerve racking!
Our oncology surgeon isnt even sure if he can do the surgery, and that could mean lots of travel for us to see specialists.There are still so many unknowns, and the bills from just what we have been through so far, have reached over $10,000 out of pocket. I am a 100% disabled Veteran, Total and Permanent, and unemployable. I am unable to even work to earn more money to pay the medical bills that are going to be laying in our lap. Ashley can't work as she is not sleeping well, always uncomfortable, if not in pain, and has responsibilities here (me, her aunt) that keep her from being able to go get a job now, even though she has already stated she needs to.
Ashley is so strong, and her fight with all of this will be as well. Her FAITH in Jesus Christ is stronger than ever! We know that God is in control, has a plan, and we trust His plan. We are asking for donations, not only because of the monetary problems that are arising from this, but also to make awareness of a Rare Disease. We appreciate all prayers we can get and anything you can give to help is VERY APPRECIATED! God bless each person who reads this.
