Help us fight the good fight!

Help us fight the good fight!

From Austin Wellman

My fiancee has been diagnosed with chromophobe renal cell carcinoma and has had two major episodes of pulmonary embolisms, one that collapsed her left lung, the second killed part of her right lung.

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This Fundly me has been started by me for my fiancee Lisa Jane Wilcox and our family. We have had numerous challenges in our life together, some of which have been 2 back surgeries, battling a rare form of kidney cancer, a skull surgery and now 2 bouts with blood clots. One of them just very recently out of nowhere.

January 19th was her most recent bout with PE’s (pulmonary embolism, or blood clots). She was enroute home from a trip to see her mother in Alaska and got delayed for two days in Minneapolis due to weather. In her hotel room on Sunday, January 20th she woke at 2:30am in intense acute pain. She ended up taking a cab to the nearest hospital (Fairview Southdale in Edina MN) and after xrays they confirmed she had numerous small clots along with three very massive ones in her chest, causing damage was to her right lung, which ended up in part of her lung dying. Though it may regenerate some, the damage has been done and it’ll be easily 3-5 weeks of intense pain, without warning for these clots to break down and pass through her vascular system. Each hour is a guessing game if she’ll be comfortable or nearly doubled over in pain fighting for each breath. 

I drove over 5 hours to be with her, and saw firsthand the next morning how tremendously painful it is, even to watch her go through it. To see tears streaming down her face as these clots pass through her….only to hope that none of them move towards her heart. After talking with our primary physician after we were released from the hospital on Monday the 22nd, it was bluntly told to us that had it not been for the bad weather that delayed her flight, these already existing clots that we had no knowledge of, if she had boarded that flight...it realistically could have been her last. 

She has had skull surgery due to a Chiari Malformation. An easy way to describe it is her brain and nerve tissue was being severely compressed by where her skull joins up with the spine. This caused numerous headaches, migraines (more so than usual as Lisa is a lifelong migraine sufferer), vision changes that required her to get prescription glasses, a change in her short term memory and changes in her speak/cognitive abilities, even something as simple as stringing words together to make a sentence. The procedure required the removal of a one inch section at the base of her skull to relieve pressure that was causing all of the issues. Some things have been better since the surgery, but other things such as the vision changes, headaches and migraines and speech and memory remain an uphill fight. 

Upon going to a routine doctor’s appointment following her last back surgery, she had an MRI to see how the healing process was coming along The scan happened to show an area on her right Kidney led to questions of what it was and a biopsy was ordered. The results came back as Chromophobe Renal Cell Carcinoma, a very rare form of Kidney Cancer that affects the cells within the lining of your kidneys that help filter the toxins in your body. The spot that was caught on the MRI by chance was a large tumor that required a near total removal of the Kidney. 

Luckily for us the surgery the biopsy showed that it was not cancerous. The difficulty with this disease is that there is no known cure. Typical treatments such as radiation or chemotherapy to eliminate the possibility of cancer within the tumor will not work because the kidney tissue density won’t let the treatments pass-through. The only thing that can be done is removal of the affected areas as they occur. Per medical records in 2012, out of the estimated 64,000+ cases of Kidney cancer, Chromophobe only accounts for roughly 5% of it, and those cases are usually people 60 years of age or older. Lisa is actually the youngest reported case on file. Surgery ended up happening in Zion, Illinois at Cancer Treatment Centers of America. This was due to the condition being so rare, many hospitals, especially in our area of the country, have no idea how to handle it and what to do. 

Luckily at this point, she has only needed to have the initial surgery with this. Now it is routine checkups and testing before she can be deemed in remission. All of the medical work has been done at Cancer Treatment Centers of America in Zion, IL.

We have a home together with our two sons, so obviously a mortgage and bills coming in daily, normal household as well as doctor bills that are now well into six figure amounts. 

Her back surgeries are due to degenerative disc disease which fusions have occurred. She also a shoulder that will likely be needing an operation in the future; clearly she is not able to work at all.

We have been working tirelessly on our own and with an attorney to achieve assistance with disability, even since her cancer diagnosis two years ago now...but the state of South Dakota keeps denying us. We are now on our third appeal, awaiting to have a court hearing. So there is no help coming in except for Medicaid at this point. 

I myself, am the sole financial provider and am a full-time auto mechanic that makes a modest living trying to survive, pay our bills on time and support my family of four comfortably. I am also Lisa’s caregiver and work very hard to make it to every doctor appointment I possibly can so I can stay informed of exactly what is going on, and that takes away from my employer and my income. As a matter of fact, as you are reading this I am missing work so I can remain vigilant and nearby to Lisa as she is still only a day out of the hospital.

Obviously the bills don’t quit when life throws you curveballs and we’re trying to make ends meet honestly and pay what is owed. So the money being raised would do exactly that...help keep things on track at home and also to aid us in travel expenses and medical bills as they come up. 

Whatever help could be given by anyone would be immensely appreciated! Thank you very much for listening to us! 

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