Michael’s VHL journey

On August 16th 2021 our lives were changed forever. Hello, my name is Melissa and I’d like to tell you a story about the most wonderful man I’ve ever known, my husband. Michael Donnell Winstead Jr, lovingly known as “Uncle Mikey”

No different from any weekend, our balcony was full of family, friends, food and laughter. We’ve always had an open door policy and love to host dinner any chance we can get. At the end of this particular night once all our company had left, Michael cleaned up outside as I ran a few errands. It took one slip and he went head first over the balcony and onto a concrete pad approximately 15 feet below. We aren’t exactly sure how much time had passed from the fall until I returned home to find him, conscious but in extreme paid. We called an ambulance and headed to the hospital. The wait seemed to take forever but once all the scans and tests were ran, we felt like we could take a sigh of relief. Luckily, he only required 1 surgery, a large rod and 2 screws to repair a broken leg. We couldn’t believe how he managed to not sustain anymore injuries, we were thankful. The day after surgery he was able to go to physical therapy and had amazing results (he walked a flight of stairs with 2 crutches the morning after surgery) things were looking good and we were anxious to get back home to our kids. Day 3 of our hospital stay comes and we’re expecting discharge instructions and medications. The discharge papers never came, instead we had numerous drs from all different fields (Gasto, oncology, geneticists) come in at various times of the day asking random questions “Do you experience heartburn or indigestion?” “Have you noticed blood in your stool?” “Do you feel any pain in your abdomen?” “Do you know if anyone in your family has any genetic disease’s?” No, no, no and no…we had no idea where this was all coming from. That’s when they tell us that they discovered numerous tumors all throughout the pancreas and kidneys, they’ll need to perform a biopsy to be safe. The biopsy is performed, more scans are ran, more blood drawn. By this point we’re anxious, but in our minds we’re optimistic. What are the chances of a healthy 35 year old man having cancer in his kidneys and/or pancreas? A few weeks go by, we’ve already let our closest family and friends know. The day comes to visit oncology, it’s cancer. Not just any cancer, Von Hippel-Lindau disease a rare, inherited disorder that causes tumors and cysts to constantly grow in certain parts of the body, including the brain, spinal cord, eyes, inner ear, adrenal glands, pancreas and kidney. The tumors are usually benign but not in Michaels case. The oncologist and gastroenterologist decided that a Whipple procedure will be his best bet. During this procedure they’ll remove the head of the pancreas, the first 12 inches of small intestine as well as the gallbladder and the bile duct. This surgery is extremely complex but is our best chance at getting all the cancerous tumors removed before they begin to spread. I felt selfish that in that moment, I wondered how we’d manage the hospital for a week with 3 kids at home, how were we going to make sure the bills stay paid without missing doctors visits and chemo treatments? We didn’t need any more information or a second opinion, this team of doctors had carefully thought out the best plan of action and we were willing to do whatever it took to make him healthy, and keep him home. The holidays are approaching so we’ve got to get the ball rolling. More tests, scans, labs and several long trips to the dr later, the plan we thought we had to save Michael, fell through. The neuroendocrine tumor on his kidney is spreading, and quickly. “We’ll have to push back the whipple and take care of the kidney, in cases like this you have to prioritize based on the best possible outcome and potential quality of life” I guess that’s when it’s truly sank in, there’s a chance this may not end the way we had expected. What CAN you expect? How do you prepare? Most days I don’t have the words to describe the fear I have of losing him, other days I completely forget he’s sick. But every day without fail, he’s the rock of our family. Michael is a kind compassionate man, who served in the navy.He’s the one everyone calls when they need help with something, the first one to volunteer to help someone and the last to expect anything in return. We both consider ourselves very private people, and have tried not to burden family/friends with the stress of the situation, but I’m not sure how much longer we can make it on those terms. We need prayers, we need good vibes, we need financial assistance, we need a miracle. Michael’s first big surgery is coming up January 7th, he will be on bed rest for a while. As he is the breadwinner, the time off work is going to cause us even greater financial difficulties. With an extremely humble heart, Im asking for donations from anyone who may be in a position to do so. Any funds collected will go towards traveling expenses (2 hour drive to cancer center) medical prescriptions, and household bills. Thank you all so much for your time, and consideration