Joseph's Story
I know that many of my readers are familiar with my son, Joseph, and his battle with cancer. But I wanted to tell his entire story for both those readers and those who are not familiar with his experience. I will keep this page as a permanent link for all to read.
Joseph is my first born. Even before I met my husband I always felt like there was a little spirit waiting and wanting to come down. So it did not surprise me when we became pregnant just three months after being married. He was born in the wee hours of the morning after laboring for about four hours. He was a big boy at over 8 pounds. And his little face was squished so that his eyes, nose, and mouth were all in the center of his face. After the forceps required to extract him, we were still surprised to see how funny he looked. His little head was covered in whispy dark hair, and his eyes were a dark, dark gray.
Joseph's battles began early with a terrible bout of colic. The boy just couldn't burp or pass gas so his feedings were difficult. He cried and cried and was always drawing up his legs in the most terrible pain. It was a challenging time for his dad and I as we struggled to know how to help him. After about 4-5 months, the colic seemed to get much better and he developed a happy personality.
At the age of 2 1/2 and almost 3 Brett and I left he and his sister with Grandma so that we could take a trip to Hawaii together. When we returned she informed us that he had been suffering from diarhea for a few of the days that we were gone.
We had not been home long, when he developed flu-like symptoms. He was throwing up and throwing up and with such violence. We took him into his pediatrician who gave him a shot of anti-nausea medicine and we took him home to wait. He did not seem to improve. We had several calls from family members who felt impressed to tell us to take him back in. Although, we felt silly for going in two times in one day, we made the trip to the after-hours pediatrician. He did not hestitate to admit Joey right into the hospital because he was extremely dehydrated.
What followed were several days in an isolated hospital room with several tests. It was finally determined that he had developed Clostridium Difficile or C. Diff. Typically most people contract this bacteria from taking too many antibiotics, but Joseph did not fit that description. This bacteria was attacking his colon and causing the diahrea.
We began meeting with a Pedatric Gastroenterologist. She was fabulous and helped us work through the process of trying to help Joey get better. Although the flu-like symptoms were abated, the diarhea continued.
We were charged with collecting stool samples from a child who was not yet potty trained. And after several months of tests, and samples, and doctor visits, we learned that his C. Diff. had turned into Ulcerative Colitis. We were scared but naieve about what the difference was and how treatment would change.
Ulcerative Colitis is an immune disease where the body begins attacking a healthy part of the body. The immune system turns on but does not turn off. Joey's immune system was attacking a particular part of the colon and there was no relief from the symptoms no matter what we tried.
In the midst of this new diagnosis, Joseph was also diagnosed with asthma. We took turns spending time in the hospital each year for either bronchitis or dehydration. We became very adept at packing up and heading to the hospital.
Joseph was a trooper through all of it. He rarely cried or complained even after days of throwing up, IV's, and test after test. He was pleasant and kind to the hospital staff and doctors no matter the situation. I was most often the one staying with him at the hospital while Brett attended school full-time and worked full-time.
During the 10 years of Joseph's disease, we never found relief for his Ulcerative Colitis. Many people have periods of relief and remission. That was not the case for Joey. Instead we made plans for him to attend school despite having 6-8 trips to the bathroom a day. Often he was not able to make it and took an extra pair of clothes with him to school in case he needed to change. He withstood ridicule from his peers, the embarassment of his situation, and the struggle with being different.
Joseph has the amazing ability to be cheerful and to make friends. People loved him. He was polite, kind, loyal, and hard-working. Although Joseph's disease made things like Field Trips, Recess, School-wide Testing, and basic other skills much more difficult he never complained. His teacher's loved and respected him. Joseph was typically at the top of his class and was always surrounded by good friends.
We continued to pursue his care as we moved from Utah to Savannah, Georgia. We tried tried-and-true treatments, innovative IV therapy, dietary changes, and everything we could think of yet there was no change. Joseph continued to have chronic diahrea, frequent bouts of flu-like symptoms and trips to the hospital.
In fact one of his medicines, caused kidney stones and so we ended up in the hospital again for a few days as they learned of and worked on this new development. He passed one of them and spent half the day in the Emergency Room on Christmas Eve in excruciating pain. One of them was the size of a small watermelon seed and quite sharp.
In the fall of 2005, Joseph had his typical colonoscopy. The doctor mentioned there was a hardening in the colon, but we received no information that we should be concerned or worried.
When we returned to Utah, we met back with his original doctor and continued treatment.
During the summer of 2006, Joseph seemed extra run down and tired but we attributed it to our move and starting a new school and hayfever. Joseph began to complain in the early fall of a hard spot in his intestinal area. I could not feel it. But when we went to his appointment with his gastroenterologist, we discussed it. She was concerned. She could feel it. She immediately sent us from our doctor's visit over to Primary Children's Hospital for a CT scan. We spent hours waiting for our turn and then for the diagnosis. There was something blocking his colon.
His doctor once again discussed with us the back-of-the mind thought we had all known: that we might need to remove his colon. It was much earlier than we had planned to do this, but it needed to come out. We were scheduled for the following Monday.
We were not more worried than any other procedure. The doctors and nurses were kind and reassuring. Joseph was a typical trooper and remained calm and jovial. When he came out of the procedure, the nurses commented on how polite he was. I was proud of him and happy to see his sweet little face recovering well.
But we were not prepared for what came next. The lump was the size of an apple. They sent it out for testing. I remember sitting in Joseph's room. He was watching TV and still in intense pain. The scar spread across his abdomen from hip to hip. It hurt to walk, to stand, or even use any of his stomach muscles. The doctor called me out into the hall.
"It's cancer," he said. I felt instantly light-headed. I need to lay down, sit down, pass out, something. "I need to sit down," I said. He reached for the nearest wheelchair. I sat while he continued to explain. "It appears that it has been touching the liver so I scraped off what I could see on the exterior of the liver," he said. He went out to explain some details with me. He was shocked and saddened for us.
I returned to Joey's room. He could tell something was wrong, but I remained calm and tried to appear fine. He did not need to hear the news yet.
I left his room to call Brett. As there is no privacy in a busy hospital, I sat in the foyer of that hospital floor and sobbed as I gave Brett the news. He was shocked and upset as well. We were heartbroken. Our worst and yet impossible fears had come true.
Joey recovered well and was sent home to recover while we waited for the next step in his treatment.
Within a few weeks we returned to the hospital to begin chemotherapy. The oncologist discussed with us a treatment plan. We were clueless and confused and lost, but we listened and tried to research and tried to trust that this doctor would know best how to treat our son. I look back now I have so many questions I would have asked then. But I am not a doctor. I could not even think of all the things to ask or wonder about. No one ever said what stage of cancer it was or what the outlook would be. But we definitely could tell it was serious.
Joseph's chemo required that he have a three day hospital stay each treatment. He was thrilled to learn that the oncology floor had X-box's in every room. He sat in his hospital bed and received his treatment. I stayed at his side as much as possible. On some days his dad would come and stay and work from his hospital room. We were blessed to always have one of us at his side.
After several bouts of treatment, and several scans it was determined that the cancer had spread to his liver. In another agonizing surgery, they removed half of his liver. This scar stretched from his sternum past his belly button, forming the shape of a saber sword, which he actually thought was quite cool but scared his father and I. The doctor called us back to the lab where she actually showed us how much cancer the liver contained. The spots were each the size of a 50 cent piece. I was sickened and devastated.
Joseph struggled to recover from this surgery. It was really never the same after that point. Just a few days after this surgery, his bowels stopped moving. They opened him up AGAIN to discover a twisted bowel. They fixed it and closed him back up.
They transported him from his bed in Primary Children's to the LDS hospital for radiation treatments on top of chemotherapy. I had to pick up my little boy and move him from one wheelchair to another. We took a terribly bumpy ride from one hospital to another in the back of a hospital van. Joseph moaned in pain and we carried a throw up bowl with us everywhere. I was angry that he had to be transported at all. I wavered between anger and frustration and exhaustion. Why couldn't this be easier on him?
There came a time when they asked us if we wished to care for him at home. Joseph wanted to be at home so he actually rest. We learned we could continue radiation treatments at the cancer center at a closer hospital. We were thrilled. Brett and I were trained on giving him daily shots, changing his central line and IV, taking his blood pressure, and administering his medicine. Although I have been queasy over blood most of my life, the mother bear in me kicked in. I tracked his dosages, stayed up with him through the night, and cared for all his basic needs.
He stopped eating almost immediately upon coming home. We had nutrition through his IV. He could not leave his bed to urinate. He could not stand to be touched. We increased his morphine and administered Benadryl ever four hours. He lived for the Benadryl. He hardly talked. He slept all day and all night and woke only for short bouts of labored conversation. He contracted pneumonia and struggled with coughing. I sat the doctors down and asked them the hard questions, "Would he recover?" Their answer was "no." "What is the time table for this then," I asked. "Soon. Within a couple of months most likely," was their reply. I was shocked, disbelieving, and unprepared. We made the decision to tell him the outcome because we didn't feel it was our right to keep that from him. That was the hardest conversation I have ever had in my life and I wouldn't wish that upon my worst enemy. It was devastating and he could hardly fathom the news. I wonder sometimes if we made the right decision telling him, but at his age I felt he had the right to know, to prepare, to be aware. No parent should EVER have to tell their child that they are dying. It was awful, horrible and excruciatingly painful. I still feel deep hurt over that conversation and that diagnosis.
Joseph celebrated his 13th birthday on April 14, 2007 with Make-A-Wish. They went all out with a Clone Trooper costume. Darth Vadar and a storm trooper attended. They spoiled my other two children with so many toys. Although he was grateful, he lay on the couch and begged to be taken back to his room almost before the festivities began. He had no energy to give other people--let alone us. We did see one smile as he received his gifts from his siblings and us the morning of, but he was past the point of caring any more. It was simply too much.
A week and a half later, Joseph asked to sit up. He was having some trouble breathing. I put him in a recliner. Then we tried sitting him up on the couch. I left the room for a moment, and when I returned he was sitting up struggling to breathe. I loaded him up in the van and drove him to the after-hours pediatrician. They took his oxygen stats. They were appallingly low. The doctor called the hospital, which thankfully was just a half block away. The EMT's arrived to transport him that short distance. I called my husband and met him in the hospital ER.
It was chaos. Doctors were rushing around him. They had already taken a chest x-ray. The life flight pilots arrived, and they discussed transporting Joseph up to the children's hospital. They intibated him. Brett and I wept in each other's arms as we watched our little boy be put under. They wheeled him out onto the helicopter. I couldn't help thinking that he would have loved knowing he was going on a helicopter ride. They asked us questions about resuscitation. Despite knowing his diagnosis it was unnatural to suggest that we would ever "let" our child go. We begged them to perform whatever lifesaving measures were necessary.
Brett and I rushed home to grab some supplies and then made the 40 minute drive up to Primary Children's hospital. We rushed into the Intensive Care unit to find Joey actually somewhat coherent. We asked him how he was doing, he gave us a thumb's up sign. We laughed at his always positive attitude. He continued to maintain his positive personality despite it all.
Joseph continued on the breathing tube with in the ICU. We were encouraged to say our good-byes. We notified our extended family and they made the treck up to the hospital. They allowed us to escort two family members in at a time to say their good-byes. They sedated Joseph just a bit so the people would not overwhelm him. I sat in the rocking chair and I watched those he loved whisper their good-byes and hear them thank him for the kind of boy he had been in their lives. It was a beautiful glimpse into the life he had lived and how many people he had touched. To see my heartache mirrored in their own faces was so difficult.
Joseph hung on for a few days more, but in the night of April 27 as I lay on a cot next to his bed, I heard something change in his breathing and movement. I awoke instantly. I voiced my concerns and the nurse agreed that Joey was struggling more. When morning arrived, I called my husband and asked him to come up--something was not right.
April 28 was the most difficult day of my life. We knew what was coming. We cried. We each spent individual time with him trying to say a lifetime of loving messages. I won't share the details of his passing. It is personal, private, and painful. It was horrible. It was devastating and agonizing and filled with more pain than I knew was possible for human beings to suffer through. My beautiful son passed away in the evening and we had to return to a home without him. I will never forget the details of the day even though part of me wants to.
Returning home to tell our other two children and my Mother was agonizing. They were heart broken, and we all spent most of the night weeping. For days we wept. Our children wept. We wept. Jimmy, Joey's younger brother, worried over our reactions. He would flash a huge smile at us every time we cried in an effort to cheer us. It worked. And we tried for their sakes to be strong.
Joseph's funeral was beautiful. So many friends and family from his and our past attended. We felt loved and blessed. It wasn't a sad day for me. It was a tribute and honor to Joey's life, and I was proud of my little son. We selected a casket to match his love of Star Wars: shiny silver and unadorned. We covered his casket with beautiful flowers and gardenias, which were his favorite flower from our life in Savannah. It was a beautiful day.
Although I miss my son every minute of every day, the one thing that has uplifted us and sustained us is our belief in an afterlife. We believe that when we die we are met by loved ones and the Savior who welcome those who have lived right into a state of rest. Joseph certainly deserves rest. I know that when I die, I will see my son again. I look forward to that day. I expect to see my little son tower over me and lift me up in a big hug. I will laugh and rejoice in that. In addition to life after death, we believe in the Resurrection, a time when Christ will return to the earth and all who have lived and died will be lifted from the grave. Spirits will return to bodies, and we will have the opportunity to finish raising our son, watching him grow in health and possibly marry and raise a family of his own. I could not share Joseph's story without sharing my testimony of this. I KNOW this. Joseph would want me to share this with you. If you would like more information on our beliefs as Latter-Day Saints (Mormons), you can read
here.
If you have suffered a similar loss, my heart goes out to you. My heart aches for you. I have talked with several parents and children who have lost loved ones. I would be happy to talk with you if you feel the need to share your story. Please feel free to reach out if you need someone to talk to. It would be a beautiful way to honor Joseph's memory.
I love you, my sweet boy Joseph!
