Today we are fortunate enough to hear from Colleen. She is sharing her story of sarcoma from the perspective of a caregiver- a role so many of us can relate to. Thank you Colleen for sharing the staory of what an inspiring person Chad was and reminding other caregivers that they are not alone.
Eric D. Davis Sarcoma Foundation (EDDF): Tell us about Chad
Colleen Wogornese (CW): Chad was a amazing, loving, kind hearted person. He was the kind of husband every girl dreams of having! He was a wonderful, active father to Ethan, age 3, and Nolan, age 21 months. He was very involved in every aspect of their lives, and truly lived for his family. He always put his family first, and loved life. He was also very catholic, and active in his faith. He was an avid Brewers fan, enjoyed spending time in the garage fixing things, or working on wood working projects. He also enjoyed hunting and fishing and being outdoors.
When Chad was diagnosed with cancer, his love for life and his family was what kept him going. He had incredible strength and a strong fight. Rarely did he complain, or even let others know how much pain he was in. He was brave, positive, and a pure inspiration to everyone he met. Even in his final moments, he always made sure to put others first, and make sure everyone knew how much he loved them.
EDDF: How did Chad figure out he had Ewing Sarcoma?
CW: In October of 2012, Chad came down with what doctors thought was pneumonia. After a few weeks battle with pneumonia, he was admitted to the hospital to drain the infection from his lung. After countless antibiotics and cultures, the doctor could not figure out why the pneumonia would not go away. He was taken in for a thoracotomy, and rather than the surgeon being able to clear the infection, he found that the lung was covered in tumors. On November 12, he was diagnosed with Ewing Sarcoma. We were quite shocked, as Ewing Sarcoma is generally a pediatric bone cancer. Chad was 29 years old, and had the cancer in the chest cavity and lung, not in the bones.
EDDF: What were his treatments like?
CW: I don’t think I will every truly know what his treatments were like. Chad dealt with the symptoms with such strength and grace, and fought on to make sure he could spend time with our family. He first got VAC, which was a one day inpatient chemo. This chemo regiment was manageable, both for Chad, and our family. The second round of chemo IE, began inpatient, which was hard for both Chad, as well as the kids and me. Spending time alone in the hospital for Chad was very discouraging, and the kids had a hard time dealing with him not being home with them. After the first round of IE, he was allowed to complete the treatment outpatient, which made his spirits much better. The hardest parts of treatment for Chad were the fatigue, the bone pain from the neulasta shot, and the time spent away from his family. Also, not being able to work, was very hard for Chad. He constantly felt like his role as a husband and father, to take care of us, was ripped away. He wanted nothing more than to go back to work, and regain a sense of normalcy in his day.
EDDF: What were they like for you as a caregiver?
CW: As a caregiver, seeing him in pain, and constantly tired was very hard. I wanted so badly to take away his pain, and there was little I could do. Many days I felt helpless. The frequent appointments made it hard for me to work, and gave me less time at home with the kids. It was a struggle some days to make sure that we maintained roles as husband and wife, and did not let cancer change that.
EDDF: What tips do you have for other caregivers?
CW: The number one tip, is to make sure you do things to keep a balance. Make sure if you are taking care of a spouse, you keep having date nights, and time for yourselves as a couple. These times were something we both cherished, and made us forget the diagnosis, if even only for a brief time. Make sure you do things to make memories, and keep life normal. Also, as a caregiver, take time for yourself. If you do not take care of yourself, you will not be able to take care of anyone. Stay positive, but take the time to let emotions out. Make sure you keep the lines of communication open, listen to the patient, and make sure you convey your fears and feelings to them. Do not shut them out from your feeling, they already feel like they lost a part of life, they do not want to lose you too.
EDDF: How did you and Chad talk to your children about sarcoma? Where there things you were able to do as a family while Chad was not feeling well?
Our children were so young, we just explained that daddy was sick, and his body was not working the way it should. We explained that he would have to visit the doctor a lot, and they would take care of him, and help him to feel better. We discussed the illness when they wanted to talk about it, but tried to keep life as normal as possible.
We did a lot of things as a family while Chad was sick. On days he did not feel well enough to leave the house, we would do special crafts, bake, or watch movies. Most times, Chad wanted to get out of the house and continue to experience life. We did the same activities we always had done as a family. We spent more time with extended family, and we were lucky enough to be able to take a trip alone as a couple, a trip as a family, and a final wish trip with our extended family. We were very blessed with amazing family and friends to support us in so many ways.
EDDF: How can friends and family lend a hand to a family facing sarcoma?
CW: Offer help, even when not asked. Drop a meal by unexpected. Send the family a card to let them know you are thinking of them. If you can afford to help, send a gas card, drop off groceries, or give the family things they can do together, wether it be tickets to a movie, or a board game to play at home. Offer to babysit for them, so they can spend time together. Above all, ask how they are doing. When you ask, be ready to listen, and let them know you are always there, no matter what they have to say.
EDDF: Were there any quotes or advice that helped you during this time?
CW: The best advice we had was to FIGHT FIGHT FIGHT. Fight for the treatment you deserve, and answers to every question.
Quotes: Our favorite was “You may have to fight a battle more than once to win it” Margaret Thatcher
Also, “Never give up on anybody. Miracles happen every day.” “Accept what is, let go of what was, and have faith in what will be.”