Becoming "That Family"

I always wanted to write a book. Ever since I can remember. Maybe it was life's foreshadowing. Years ago, I even got books from the library about how to get started writing a book. Yet I never knew what I would write about...what was there about my life that anyone would be interested in reading? So I never started. In the last eight months, the topic of my book has been made very clear. It's amazing how God has a way of revealing His purposes in due time.  I have tried to begin by journaling about the events that have unfolded this past year many times but could not bring myself to do it, until now. 

 Proverbs 27:1 says, "Do not boast about tomorrow, For you do not know what a day may bring forth." 

I have heard terribly sad stories before  where people say their lives changed in one moment. We all know families who have been through tragedies and sicknesses that wreaked havoc on their lives. I have looked at those families and thought, "I don't know how they are getting through that...that poor mom, I don't know how she is making it." We have prayed for "that family" and done fundraisers for "that family" all the while feeling so invincible and exempt from ever facing those trials. On May 10, 2013, we became "that family." Our 15 year-old daughter Kacie had been complaining for months of abdominal pain and other related symptoms. Preliminary tests revealed nothing definitive so we kept watching to see if it got worse. After developing a fever and intense pain on an ordinary Friday, we took her to the emergency room. Labwork came back normal as did abdominal x-rays so the ER physician decided to do a pelvic ultrasound. Results of this test revealed a 14 cm solid mass in her abdomen, attached to her right ovary. With my medical background I knew that "solid mass" was a softer way to say tumor and that solid meant it couldn't be a cyst, which were generally benign. That night, they transferred us across the river to a WV hospital where she would have the mass removed the next morning. I don't remember anything else about that night at all. 

This is a picture we happened to snap that night in the ER...

The next morning at 7 am they came to get her for surgery, before my family got back to the hospital. I can remember kissing her and praying with her and then sitting against a wall on the floor outside the waiting room by myself crying. I was scared but still holding out hope somehow that it was something benign that would be removed and she would feel better. I had no idea how my life would change once the surgeon came out and told us the news. The doctor, who did an excellent job removing the mass but was lacking in bedside manner, eventually appeared and told us that he felt he got about 99% of the tumor out, that it was attached and growing onto multiple other organs, that he had to remove her ovary and that he was almost positive that it was malignant. That word is so hard to type even now. He explained that he would send the tumor to pathology and we should know for sure the next day but he acted as if he already knew it was cancer. I remember holding my husband's hand and trying to wait to lose it until he explained things. I can still see the scene in that room after the doctor left. From that moment, I would never be the same. Our family would never be the same. It was the defining moment that would set in motion a tornado in our lives. 

The day after the surgery

The next day the doctor came in and told all of us, including Kacie, that the pathology confirmed that the tumor was malignant. It did not show the specific type of cancer cells so we did not have too much information but after hearing cancer, I don't think anything else really mattered. We wouldn't know until about two weeks later the actual diagnosis. When the surgeon called, he had me write it down so I wouldn't forget. How could I forget. Desmoplastic Small Round Cell Tumor, an extremely rare and aggressive soft tissue sarcoma with a very low survival rate. He gave me statistics and a prognosis that no parent can ever dream of hearing. How could this be happening? To make matters worse, we were in the process of relocating so a team of movers was in my house carrying my furniture out while we were receiving and processing this news. One of the most vivid memories of my entire life was lying on my bedroom floor with no furniture sobbing out loud and uncontrollably while my husband held me. I will never forget what that felt like. 
As painful as it is to relive these moments and write about them, it helps me see how strong I have become in the last eight months.  

In the days that followed, we proceeded to visit doctors to try and figure out a treatment plan. We were told by a Pittsburgh doctor that he had never seen her cancer before and that he couldn't treat her. He said only two hospitals in the nation could help us, one in NYC and one in Houston, Texas. Great options for a family with six kids to consider. What a nightmare. We were ultimately put in touch with an oncologist at Nationwide Children's Hospital in Columbus, Ohio who had treated DSRCT before and may be able to help us. It's hard to even put into words the fear, anxiety, disbelief, anger, confusion and other head-spinning emotions that we experienced as we tried to deal with all of this. Getting all of the details worked out became the priority, sorting out and analyzing the situation from a spiritual perspective would come eventually. Had to "triage." First things first. Become a robot; do what has to be done and feel the effects later. Maybe that's how we got through those first few weeks. 

Having had a strong family history of cancer, I had dealt with it in the past and assumed on some level that i would have to deal with it in the future. I never dreamed it would be my child. That just can't be right...right? Could this really be our life? Could someone please wake me up from this awful nightmare? Eight months into this journey, I still ask myself those questions but I also have a new set of questions running through my mind. Could God possibly be using this situation in our lives to accomplish His purpose? Could we be the ones He chose to do something amazing in the middle of this "nightmare?" The questions never stop, but fortunately the answers keep coming. 

"For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us." Romans 8:18