— BILLY'S STORY —
OCTOBER 12, 1994 - MAY 20, 2015
We learned Billy had cancer 2 days before he went to be with the Lord. We had been trying to address the trouble swallowing (feeling like food was getting stuck or he would instantly feel full) and he was losing weight when we had a physical and endoscopy done in March of 2015. Physical and bloodwork came back fine and endoscopy showed he had severe gastritis. Biopsies came back fine. Doctor prescribed over the counter Prilosec.
A month and a half later and no improvement and more weight loss, he began to have trouble catching his breathe - he was admitted into hospital and after a CT scan, we learned he had cancer in his spine. The information was numbing and we would spend the next 3 days trying to figure out the origin of the cancer. The antibiotics were not working for his lungs - and it was during a lung endoscopy that we lost him. We later learned the cancer had spread to the blood vessels in his lungs. Weeks later, we learned from the coroner that it was his stomach. The official cause of death was Metastatic Cancer of Stomach. Which means he had stomach cancer that spread. This type of stomach cancer is diffused throughout the stomach lining and can be very difficult to find. It was only after the cancer spread outside of his stomach to his bones, that doctors were able to see it was cancer.
I can tell you as horrible as this was, his suffering was minimal in spite of the fact that he had cancer spreading throughout his body. I knew he was trying as hard as he could not to let me see he was in any pain, I was doing to same, not letting him see my heart completely destroyed. We were strong for each other because we didn't want the other to be hurting more than what was necessary. In the hospital during the three days we were there, he was for the most part, comfortable. On the first night, he learned he had cancer and I was grateful I was the one to tell him. It wasn’t long after finding out that he decided he was going to fight and he wasn’t going to leave us. His desire to fight prevented him from understanding that the doctors were saying it was extremely aggressive and that if he hung in there long enough, they were always coming out with new trials. It clearly told me, he would not survive long and it will be quite painful. Preparing for the road ahead was still at a distance, as they continued to try to get his breathing and oxygen stable.
The best part about being there for three days, was spending day and night together – he and I. I took care of him as if he was still my baby boy. We talked a lot about every day things. Whenever I dosed off for a nap, I could hear him watching "Parks and Recreations" on Netflix, and listening to him laugh – which was a beautiful sound to hear. So sweet and innocent, he didn’t deserve any of this.
On the third day, it was clear his breathing was not getting better and his heart rate is hovering around 140. We had been in the ICU all morning running all kinds of tests including a cardiogram because of his heart rate. The cardiologist indicated the Billy's heart was starting to enlarge. Through all of this Billy was calm and mindful of all that was happening around him. He watched me continuously to see how I was reacting to different information we were receiving. He talked about fighting this and that he wasn't going anywhere. Dean was already planning in his head how he would support Billy - nutritionally was the best way he knew how. He would become an expert in all the right supplements and nutrition Billy would benefit from. He told Billy, "You're not going to do this alone, whatever you eat or drink, I will too." This was probably the most important thing he ever said to Billy. Billy soaked that in and I could tell how it made him feel at that moment and I was grateful.
The next test was to try to clear out his lungs and take some biopsies. He didn't seem nervous about going into this procedure as he had been with some of the others. Billy also got a lot of prayers. He had asked Grandma Evelynn to pray with him. He told her, "I like hearing your words." This was a wonderful thing to hear and I was so grateful she was able to provide him comfort. He also received personal prayers with Dean's sister Michelle. Michelle spoke to him with such sweet love - we were all comforted. I prayed with Billy and spoke to him about God's plans for all of us and that we never know when He will be calling any of us home, but that we should always be ready. I encouraged him to talk to the Lord and let him know what was in his heart. I cry as I write this because I know, all of this gave Billy some peace and comfort in spite of all the activities going on around him. I'm grateful I got to tell Billy how incredibly proud of him I was and that he was so much more braver than I had ever known.
It was time to have the lung endoscopy. Billy's phone was buzzing off the hook from so many reaching out to give their love. So as I kissed him and said, “I’ll see you soon” and “I love you baby”, they wheeled him away.
We waited for some time before getting information from one of the nurses that Billy was having some trouble and his heart stopped during the procedure. She said they were doing everything they could and she would come back with more information soon. I knew in that moment; he was leaving us. I asked everyone to pray for him. I asked God to welcome him along side his father and sister and so many in heaven who love him. I could not ask God to let him stay – his time here would have been filled with pain and suffering and that was harder to bare then to let him go now.
Billy died at 1:15 that afternoon.
Such a perfect and pure soul, it warms my heart to know where he is. I envisioned his dad watching over him as he was sleeping during that procedure. I like to believe Billy had the opportunity to stay or to let go and be with his dad, who he missed so much. He made the right choice and I smile when I think about the two of them together – watching over us.
The outpouring of losing Billy was amazing. I received so many notes, emails, text messages and cards. Our family had more support than I could have imagined. He was laid to rest wearing his Blackhawk jersey and looked so perfect. I had forgotten all the little freckles he had around his eyes and beautiful long eyelashes.
We got to bury him next to his dad, which was another incredible blessing to receive. They are about an hour away from where we live but having them side-by-side was the only option.
After a few months, it was clear that our story was a unique one. Dying from stomach cancer at age 20 is not a common thing. I started to do research and it quickly became obvious that there may be more... that maybe it was genetic.
My first step was to ask about getting Billy’s blood tested and I was fortunate to get what we needed from the coroner. Billy did test positive for the CDH1 mutation. This is a gene mutation that is responsible for stomach cancer and breast cancer. The studies of this gene are very shocking – for men, the risk of getting stomach cancer by age 80, is up to a 70%. For women, the risk is 56% with an additional 42% risk for lobular breast cancer. So it became clear Amber (18), Joey (13), and myself needed to be tested.
The wait was long and the “not knowing” was the hardest. The results came in – I was negative, Amber was negative, and Joey was positive. So many conflicting feelings. So grateful for Amber and so devastated for Joey. In the seven months after losing Billy, I had learned a great deal about stomach cancer and this CDH1 mutation that occurs in 1-3% of stomach cancers – so very rare. We have the answers we have been looking for and now we can establish a plan and do everything we can to ensure Joey lives a long and happy life.
Joey will begin a path that will include an annual endoscopy. We are working with a team of doctors out of the University of Chicago and feel like we are in good hands. As he gets older, extreme measures will need to be taken to eliminate the chances of getting stomach cancer. Unless he asks, at this time, we will not be sharing this specific information with him. For now, he gets to be a kid and enjoy everything being a kid has to offer.
For me, one of the greatest feelings I have when I think about Billy, is the amount of love and I see others have for him. So many of you are so supportive and are hurting at the loss of Billy, and I know we are not alone on this road. I gain strength from your love and its what helps me get though the extra hard days and to be able to be there for the rest of my family. Dean and the girls, co-workers, friends and family here in Chicago, and friends and family in San Diego – you are all why we will get through this and why Joey will be okay.
I had hoped losing Billy was the end of the journey on this road, but it was just the beginning. I find comfort in the thought that Billy has saved his brother's life. He is my Hero and I feel his presence with me on a daily basis. I know from above he will watch over his brother and sister and help to bring them peace and guidance. Their big brother is always with them and always there… this gives me peace.
Love to you all,
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