May 17, 2017 Latest post:
Nov 13, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Where do we begin? Sometimes the end of the road is closer than you think!
As most of you know we have been on a roller coaster this past year and a half. It all began on December 31, 2015. Ed had not been feeling well for a couple days and his temperature kept rising. When it hit 104 degrees we decided to go to the emergency room in Maple Grove. After running several tests they sent him home. We went back the following night because he still had a fever and wasn't feeling well. That night they transferred him to North Memorial by ambulance. The doctors could not figure out what was going on. They suspected it was the Hanta virus (which is very rare). So they did testing for many viruses (viral, fungal and bacterial). They also did a bronchoscopy (taking a sample from his lungs). They really never figured out what he had. Ed had been having problems with tarry stools. He had a colonoscopy which was fine. Then a few months later he had an endoscopy. The endoscopy revealed an area in his stomach that looked suspicious. They scheduled him for a biopsy. What we first thought may be a bleeding ulcer, ended up being stomach cancer. We met with an oncologist who recommended chemo possibly before surgery. Then we met with a surgeon who wanted to do surgery immediately. On April 5, 2016, Ed had surgery to remove the tumor from his stomach. I spoke with the surgeon after surgery and was told all went well. Although they had to remove all but two inches of his stomach because the tumor was about three times the size they originally thought. After recovery we went to his room. Ed was in so much pain! The JP (Jackson Pratt) drains were filling up with more blood than normal. The nurses tried to comfort him, but he was getting worse. A few minutes later the nurse called for the emergency response team, After the team responded, he started to crash. I have heard various codes called through the years. I cannot explain the feeling when you are in in the room with your loved one and they call CODE BLUE STAT!! Being pushed out of the room, seeing a team of many more doctors and nurses running to help save him. The chaplain there trying to comfort me along with the wonderful staff. The look on our son's face when he came speeding back to the hospital after my call and could see the dozens of doctors and nurses, and the chaplain comforting me, not knowing if his dad was alive or dead. Then to see his dad who was intubated and being rushed to emergency surgery. When they brought him back to surgery they realized the doctor had nicked Ed's spleen and he was internally hemorrhaging to death. Ed's doctor told us if they had not got him to surgery as soon as they did we would have lost him. Ed was saved by approximately three minutes. Ed lost more than half of his blood. Thank the good Lord they did!! Ed was brought to ICU and he remained intubated and sedated for a few days. This was the beginning of our month long stay in the hospital. They kept him comfortable on very strong pain medication. Although, they did make him hallucinate. He said and did some pretty funny things. He had just started with fluids and soft diet until they noticed he had a duodenal stump leak. Ed was not able to eat or drink anything for what ended up being about forty-nine days. Although the doctor's were not ready to release him to go home (they wanted him to go to a rehab facility). There was NO WAY Grandpa was going to miss his Buddies (Kennedy's) graduation from high school. Although in a wheelchair Grandpa made it!!! So, he was released to my care at home. With a antibiotics, intravenous feedings, changing dressings and dumping and measure the output of his JP drain around the clock for a couple months, along with home care nurses once a week to change his PICC line dressings and blood draws. After almost six months of having a JP drain tube in, the doctor started slowly bringing the drain tube out (along with a little help from, yes, Ed himself). :-( The duodenal stump leak was not healing. We found out when the doctor went back in to fix the hemorrhage and remove the spleen, that he also nicked the tube inside Ed which caused the bile/infection to circulate inside him all that time. We thought he was on the mend until we found out he needed another surgery for an incision hernia caused by the original surgery. Ed had a follow-up PET scan six months after he was diagnosed and the scan looked good! No cancer!!! He did have kidney stones and gallstones due to the intravenous feeding. On Christmas Eve we were hanging out with our family at our house. It was a very special one! Tony and his family were home from Kansas and Chris, Nicki and the kids were here this year for the holidays, which they usually go to Nicki's family for Christmas and her birthday. Ed was relaxing and hanging out with everyone until he went to lay down because he wasn't feeling well. After much pleading I took him in to the emergency room at North Memorial. We found out that one of his kidney stones was trying to pass and because it was so large it blocked the ureter. The doctor had to put a stent in to push the stone back in until they could have him come back to blast the stone. Ed knows his body quite well! He was still not feeling right and had continued pain, so we made an appointment with his surgeon. The surgeon didn't know what more it could be other than he also had the gallstones. Ed suggested moving his next PET scan up a month, which they did. We went back to his oncologist for the results. This scan showed the cancer has now metastasized to his liver and lymph node. This is when we were told there is no cure. He now has Stage IV stomach cancer that has metastasized to his liver. Ed's oncologist told him he could start chemo to help relieve the pain, but again made it clear this would not cure the cancer. National statistics say without chemo he could possibly live 6+ months and if he chose to have chemo he could have possibly 12-18 months of life. Ed was very against chemo when this all started, but has decided to give it a try. His chemo treatments will be 1 day in the clinic for a 3 1/2 chemo infusion, then a bag of saline (approx. 2 hours) for hydration. Then after that , they connect a chemo pump to his port which he has on for 46 hours, on day three we go back to disconnect the pump and he gets another bag of saline for hydration. This we will do every two weeks for the rest of his life or until he says "no more". Ed will be on his fourth treatment this week. So far, the chemo does not seem to be helping the pain and he is very tired and weak. He is not sure if the chemo is worth feeling terrible 6-7 days out of 14. Ed, Chris and several friends have been doing research on various alternative options. Ed and I want to thank all of you who have reached out with kind thoughts, prayers, manual labor, or just your time to come visit and a big hug! As Ed says it is out of his control and in God's hands now!! We will be updating you on this sight as we find out more. Love, Pam and Ed