Finding The Good

By Cristina DiMascio

“It’s all good.”

This wasn’t the first time I’d heard those words but this was the first time I had actually thought about what they really meant. My mom, stepdad, and I were in the midst of a car ride to a friend’s house when we received a call from my stepdad’s doctor informing us that his disease had progressed into leukemia. In reality, everything was not “all good” but it was just like my stepdad to say that in a time like this. He was always finding the good in a bad situation such as the one we were in.

My mother and biological father were divorced by the time I was five years old. Not seeing much of my dad at all after that, I was raised by my single mom throughout my early childhood until she remarried. I was seven years old when my mom and Bill married and, soon after, he became a father figure and someone I looked up to. Bill was a real “dad” to me unlike the one I was assigned before I was born.

Shortly after Bill came into my life, he became ill. His illness started out as something most people would think was the common flu but after numerous doctors’ visits and his unchanging condition, we realized it was not what it seemed. Our primary doctor sent us to a gastrointestinal specialist and a hematologist in hopes that they would have an answer as to what his illness was. After visiting each of these doctors multiple times and post gallbladder removal, they sent Bill away just as his primary care doctor had with still no answer to his condition. I remember thinking that this would last forever and we would never find an answer, but my mom refused to take this “no answer” and began researching Bill’s symptoms and condition. Her research resulted in Bill going to yet another doctor. We went to the top gastrointestinal doctor in the Washington area. After one look at Bill’s file, he immediately sent us to George Washington University, a teaching hospital. He said they were our only hope of finding out what his rare condition was.

At George Washington University Hospital, we found an amazing team of doctors that were very hopeful and, finally successful, in diagnosing Bill. This entire process took about a year and finally Bill was diagnosed with Myelodysplasia Syndrome, which was a rare disease of the bone marrow. Most patients diagnosed with this disease are seventy years or older and get it as a result of chemotherapy treatments. My stepdad was only 39 years old and they believed he got it due to him having a third number-eight chromosome. It was a relief finally knowing what disease Bill had but this was not good news. Now that he was diagnosed, he would need to find a bone marrow match in order to receive a bone marrow transplant that would hopefully cure him and save his life.

Living with Myelodysplasia Syndrome gave Bill a surprise each day, and not a good one. With this disease patients have little to no immune systems, so common colds can be deadly. Bill was hospitalized multiple times while he had this disease for simple things such a biting his lip but since he was living with Myelodysplasia Syndrome and had no immune system an experience like this caused him to have a near death experience. Each time Bill was hospitalized he always managed to make it out alive and well, it was as if he was indestructible.

My stepdad was a service plumber and because of this disease he could no longer physically continue with that job and took a step down in the company to become a fleet manager. His annual salary went down drastically and because of this my family’s financial situation suffered. We came close to losing our house due to foreclosure. With my stepdad’s condition and the fear of losing our house, my family was constantly stressed and filled with anxiety.

Several months after Bill’s diagnosis, we were informed that his disease had progressed into leukemia and that we needed to take immediate action to get him a cure because now they were dealing with treating Myelodysplasia Syndrome as well as AML leukemia.

Hearing the “leukemia” word immediately made me alert. I had heard of other people having that disease and knew it usually resulted in death. I felt that as soon as something good had come into my life it was about to be taken away from me. His doctors at George Washington University hospital advised my family that it would be in Bill’s best interest to find a teaching hospital that specialized in bone marrow diseases and bone marrow transplants. After more research and visits of the different hospitals available, my mom and stepdad decided that Duke University Medical Hospital in Durham, NC would be the best choice for Bill.

In November of 2010, my mom and Bill moved to North Carolina so he could receive proper treatment for his disease while I stayed in Virginia with my aunt and uncle to continue with school. Although it was hard being away from my mom and Bill at such a young age, I visited them several times a month while they lived there.

My stepdad’s disease and low immune system put him in a very secluded wing of the hospital. I remember having to go through three separate air-locked doors to get to where his room was located. I had to wash my hands and put on a gown covering my clothes as well as gloves and a face mask before entering his hospital room. Each time I visited my stepdad, his face was paler and he was skinnier than the last time I was there. Once he began his chemo treatments, I remember one visit my stepdad let me cut all of his hair off so it wouldn’t fall out slowly making him look sicker.

My mother and stepfather’s stay in Durham for the first part of his treatment lasted until early December 2010 and they were allowed home for a three week period until they had to go back to get Bill ready for his transplant. We spent the holidays with family and it was almost back to normal having them home again. All of my aunts, uncles, cousins, and grandparents came over to our house for Christmas. We made enough food to feed a small army and there were enough gifts to give to the whole state of Virginia. It was as if my world was back to its perfect peace as it once was before. I don’t remember there being a sad moment even once that Christmas.

My mom and Bill went back to Durham in the beginning of January and began getting him ready for his transplant. Saying bye to them the second time was even harder than the first. My family was splitting up again. They had found a bone marrow match that would work for my stepdad and made the arrangements of when they would start the transplant. A transplant takes up to twenty-one days to engraft. Once Bill was given the transplant, the waiting process was grueling. Things were starting to look hopeful to the doctors but just as his condition started to look promising, they then took a turn for the worse. Since my stepdad had no immune system, he got graft versus host disease which affected his GI tract as well as his skin. In addition to graft versus host disease, Bill also had developed fungal, viral, and bacterial infections. As the days ticked by his bone marrow transplant was not engrafting and the doctors said things were looking worse and worse. Hearing this news, my mother and I kept hope that things would turn around. My stepfather once again told us “It’s all good” and I wanted so badly to believe him. Eventually, all of this led to my stepdad’s organs slowly beginning to shut down and his blood becoming acidic, which leads to death. The bone marrow transplant had failed.

It was the morning of February 14^th, 2011 when my mom got the call that Bill wouldn’t make it another day. All of my aunts, uncles, cousins, and grandparents had come down the night before and that morning we all went over to the hospital.  The nurses removed all of the tubes and lines attached to monitor my stepdad’s vitals so we could say a final goodbye. Normally, only two people were allowed to be in the room with a patient at a time but the nurses made an exception considering the circumstance. I remember being in the room and holding my stepfather’s hand as he took his last breath in this life. A smile crossed his face as he said goodbye in his own way to us. I can honestly say that was the hardest moment I have ever had to go through. I will never forget looking around the room at each of my family members grieving in their own way, some crying while others mourned silently. My heart felt as though it was being ripped out of my chest and my sight was all one big blur through the millions of tears falling down my face. I had never felt this way before in my whole thirteen years of living. My mom and I were the last people in the room with my stepdad’s body growing colder and paler by the second. Eventually my grandfather came in to take us home and I remember never wanting to leave Bill, but I knew I had to. Squeezing his hand and kissing him on the cheek, I said goodbye to my stepdad one final time. In that moment all I could think about were Bill’s three words of choice. It’s all good. It may not have been all “good” in that moment but I had hope that things would be again eventually.

It has now been five years since my stepdad’s passing. Going through that experience was the hardest, most heart wrenching experience I have ever had to go through in my life, but from bad comes good.

Living day by day without a father figure has changed my life greatly. My mother and I had to cut back on our spending with only one income to support us now. My mother had to live with being a single mother and now as a widow.  Without the support of family and friends I don’t know how we would have made it through this. Although it does get easier day by day living without him, the ache of missing him never completely goes away.

Throughout all of the doctors’ visits that I tagged along with my mom and Bill, I realized my true calling in life was to become a nurse. I want to be able to make a difference in the lives of others in a positive way. I want to be able to tell people, “It’s all good,” and to mean it.

Many people go through the death of a close family member but not many can say that they got something as meaningful as a potential future out of their experience.

I want to share Bill’s story with my future patients to spread the hope and positivity that he had even when there wasn’t much to be hopeful or positive about. This experience taught me that you can always find something good even in the worst situations. “It’s all good”.

 

EDITORS NOTE:  Bill was a born-again Christian with a Savior (Jesus Christ) and certainty of his eternal future (Heaven).  His saying, “It’s all good,” is from scripture and is how he lived his life.  Romans 8:28 says, “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”