This is an article written for The Healing Herald, a newsletter for the University of Colorado Hospital, by my friend Tiffany.
As a parent, the most frightening thing you can face is something happening to your child. I sometimes think of warning people who may be thinking of reproducing to seriously reconsider. You are immediately turned into some kind of super freak that will watch your child sleep just to make sure they are breathing. You worry about making sure you read to your one month old baby so that they might acquire some subconscious love of reading. Every scratch, every tear that is shed and certainly every illness will be the most horrible thing that has ever happened. Eventually the nerves will calm and not everything will be the end of the world. And, thankfully, most of us will never have to face the idea of our child having any kind of life threatening illness, but for a father in a rural town of Missouri, that is the reality.
It was almost a year ago that I walked into the cancer center, sat down at my desk and opened my email. Some days I wish I had never done that. Some days I wish that my mail box had been full and I somehow missed the email. But I read it. An email about a father looking for someone who knew about stage four lung cancer. His 17 year old daughter had been diagnosed a year and half before and they were running out of hope and options. My first thought was, “A seventeen year old can’t have lung cancer.” She was just a kid. My second thought was, “we have to tell them all we know!” But there are rules when you work at a hospital and our initial desire to respond to this father’s public posts were shot down by the powers that be. He had posted in a public forum and if we responded it might appear as if we were soliciting for patients. And that was that. Except, I went home that night and watched my 2 year old run around and play and breathe and she was alive, and I just felt guilty. All night I couldn’t sleep. I thought to myself, “If it were Olivia and if someone knew something that might help her, why wouldn’t they tell me.”
I couldn’t let go of that awful feeling and in the middle of the night I found myself online scouring the internet trying to figure a way around the “rules”. To my surprise and relief I found this father on a very popular social network. Initially, I wasn’t sure what I should say, if anything. Eventually I decided to send him a message. I let him know I work with a nationally recognized lung cancer clinic involved in the latest research for treating the disease. I said that I may have information that could help him. Specifically, I told him that I felt that his daughter was a very likely candidate to test positive for a specific gene rearrangement found in a very small number of lung cancer patients. If his daughter tested positive there was a drug that she could take that is generating incredible responses. I was able to share this information because I work with someone who has made it an essential part of my job to learn about lung cancer. Someone who felt it was imperative that the first person a potential patient speaks with should be able to comprehend the information a patient is providing and be able to educate them on what they should do about seeking a second opinion. That doctor is Ross Camidge, the same one I would have to grovel to the next day as I would undoubtedly need to seek some clinical support for the father I had just made such bold promises to.
Within a few days the father responded as it turns out he had already heard about this testing and had asked his daughter’s oncologist to perform the analysis on her tissue sample, but he was going to double check, “just in case”. In the meantime I did decide to speak with Dr. Camidge. Although he was very concerned about the situation, he shared the same desire to speak with the father and offer advice and help. But he did raise genuine concern about the idea of providing false hope and maintaining expectations, naturally something I completely avoided during my impulsive decision to send a late night message. All I could do was assure him that as far as we knew her oncologist had done everything and it would end at that, but a few days later we found out that they had not run ANY tests. This was an incredible development because any patient with Non Small Cell Lung Cancer should have at least a basic molecular analysis performed on their tumor specimen, let alone a child diagnosed with lung cancer. With the permission and support of Dr. Camidge I asked the father for authorization to request her tumor so that our lab could run the test. He agreed and within one day of receiving the sample, we knew she was ALK positive. This meant that the drug that was producing such amazing results in almost every patient that took it, would undoubtedly work for her too. Every time I thought of her I also thought of my Olivia. I justified every step as if I were doing it for my own child. The day we told this father of the results will forever be embedded in my memory. I sat in Dr. Camidge’s office as we called the father of a little girl who was not just sick, but who was dying and told him that there was some hope. Dr. Camidge now responsible for providing very bold promises, from a father to a father, told him we would figure out a way to get his daughter the drug. Going back to the concern of raising false hopes, the fact that the drug was not FDA approved and our study did not allow minors access to the drug, we were faced with yet another obstacle.
Over the next few days Dr. Camidge worked with Dr. Lia Gore and the head of the pharmaceutical company that made the drug and sponsored the study, and discovered that not only was it available in a pediatric study, but that it was available in their home state. We were able to provide a call with even more good news. We called our new friend and told him his daughter would not only get the drug, but that they would not have to face the financial burden of travelling far from home to be on the study. As we sat in that office and shared in the delight and relief of what had occurred, I allowed myself to feel proud over what we had done. A father was now allowing himself to think of his daughter graduating highschool and maybe going to college. In a humorous turn of events, this father was even forced to face the idea of his daughter falling in love with a boy and wanting to get married. It can be said that the drug completely suppressed the disease in her lung. She was given months to spend time with her family and her first love. She was not hospitalized every three weeks like she had been while on chemo. She went out on dates and saw movies and danced and sang. She entertained the idea of marrying the love of her life. Her father wrote once, “I don’t know if I should thank you as she has been acting more like a normal teenager.”
I could embellish the situation and say that she felt amazing as soon as she went on the drug, that she immediately felt almost cured and that for all intents and purposes her life was better because we entered it. The drug was never a cure though. The reality is that she had stage four lung cancer. And she was always plagued with metastasis to her brain. There is not yet a drug that can penetrate the blood-brain barrier to treat lung cancer specifically. Despite her doctor’s best efforts and our intense hopes that she would be given a miracle, she passed away in December. She did not make it to her eighteenth birthday. She didn’t get to go to college. She did not get to marry or have children. She left behind the broken hearts of her parents, family and friends. When I heard the news I immediately felt defeated and so very sad. I held my little girl and wondered how a parent begins the process of saying goodbye to a child. As my tears flowed and I crumbled to the floor thinking of the incredible pain that this family was surely experiencing, I got an email from her dad:
“She has gone on to be with the Lord.
There are no feelings of regret or anger. Just emptiness and great sorrow.
She insisted that she did not want this day be full of sadness. ‘dad…I don’t want a bunch of people sitting around bawling over me when I’m dancing with Jesus.’ My baby makes a big request. Daddy just can’t comply…but I do run that conversation over and over in my mind.”
In that moment of pure humility, I was granted a look at a moment between a father and his baby as her life ends and he is left to mourn her loss, praying that he will see her again someday. Because of this father and daughter I will never underestimate the fragility of life and will prize each moment with my own child, even in her moments of utter defiance. Because of the countless hours a doctor spent counseling a father he never met in an effort to arm him in his battle, my job has become my commitment. Working where we work gave me the opportunity to share in the life of a perfect stranger thinking I was going to give some kind of amazing gift not knowing I would be the one who would be receiving.
This is my reply to her on the Article by email.
Thank you so much for writing this and I soo do want a copy…lol How wonderful to have this story from your prospective. I want so much to let the world know about what you and Doc did for us. It was above and beyond the call of duty in a job that requires so much of your emotions already. You see, it’s more than just giving Haley some time without sickness. It was you giving us hope when we needed it most. Keep in mind Haley was ready to stop sploosh. After our last treatment of sploosh Dr B told me this,” you don’t understand, if I make the decision her quality of life would be better with no treatment there is nothing you can do to get her treated, that is my decision” She also told Haley she would help her have children someday. Most important of all, Dr.B never ran the test I requested. I would say it’s safe to say a part of me is still bitter with her. But Haley liked her and would not allow me to confront her with my concerns. That someday she might be in charge of another precious child’s care.
Anyway, you guys gave us legitimate hope. Not false hope. We did have some good times together. Let me put it to you this way, we are all going to die, false hope would be to think that were not true. So the most important thing is to know where you are going when you die so that you can cling to the joy of your salvation, something Haley had down pat, living each day without concerns of dyeing tomorrow. She never voiced one time the fear that she was going to die from this disease. She let me do all the fighting to keep her here. She was ready either way.
So as you reflect back on our fight together, you keep this in mind, Haley would have died much sooner with NO treatment. You gave me quality bonus time with my baby girl. I love you guys forever for that. Doc gave me peace of mind. I had to know we were doing everything we could. I do know that from time you contacted me, we did. That was important to me. If somehow I would have just now found out that she was alk positive, I would not be at peace. I would be at war with St. Louis. The very thing I’m sure concerned doc about stepping in and helping.
I did not want someone to step in and be God. I wanted someone of top skill to step in and make sure we were doing all that could be done. Doc did that for me. I let doc know in the beginning that no matter how things turned out from the time he stepped in, I would always be eternally grateful for his help. And boy did he help. I sent him an email around mid night one time voicing some of my concerns thinking he would get to it sometime the next day (which in itself was a high expectation but in docs case I knew it was a practical one). He replied within minutes! Another time he replied he was DRIVING on his way to work!!! I got on to him for that one…lol He is too good a man to have something happen to!
Tiff, in a world looking for hero’s, I need look no further than you and doc. I love you.
P.S. my wife and I would really like to meet you two as well. It is my prayer that dream comes true some day.
P.S.S. Thank goodness you are the wonderful mother that you are to connect to the passionate feelings of being a parent that moved you to help me. Olivia is blessed to have you as a momma.