The following is an article I wrote that was published on a small new site owned by my friend. I am positing it now because it will show people that despite the pain, the doubt, the fear and the finincial disaster that cancer can cuase there is still hope and inspiration in every story. We may not make it through this month financially, but I will never stop seeing the miracle in my daughter.There is much MUCH more to her story, though it would take more than one post to tell it.
In September 2007 my wife and I walked through the doors at St Joseph's hospital in Phoenix Arizona with trepidation. We were about to learn the results of tests done on a mass that was discovered in my daughter Jennifer's Chest and back while trying to determine why pneumonia treatments were ineffective .
What we were about to find out was the end game of a 4 day trial filled with a fear unlike anything we had ever known.
Jennifer was 17 years old at the time and had been suffering with s strain of HPV which had manifested in her throat. No one has ever been able to tell us how she contracted the disease, but we do know that she was infected shortly after birth. The combination of treatments, surgery and scar tissue control destroyed her vocal chords and airway, ultimately doing enough damage that she ended up with a tracheal bypass at the age of 3 and lived with it for the next 13 years. The day she tube came out still stands as one of the most joyful of our lives.
I vividly remember walking out of the doctors office in dead silence. As much as she hated that tube and the limits it put on her life the simple truth was that it had been her lifeline for as long as she could remember. There was a strange sense of tension between us as we settled in the car and prepared to head home. I looked back at her and smiled, she smiled back and as if on queue she and her mother burst into tears. It was the ultimate expression of conflicting emotions, tears flowing over a smiling face, and I will remember the sense of hope and optimism we had that day.
Little did we know that less than a year later we would be making that walk into the hospital, and in the end walking into a new life.
We had an idea what we were about to be told. Realistically it could only be one thing, though we did our best to come up with alternative theories. In our minds we could not accept that a young girl who had gone through so much would have to endure an even harder and more devastating walk. God would not, could not allow such an unfair thing. So we naturally refused to accept the reality and substituted various of our own.
When we met with the doctor, a pediatric oncologist, he was blunt, so blunt that at the time I hated him for his seemingly heartless cruelty. He told us that Jennifer had a strain of cancer called Squamous cell Carcinoma and that it was malignant. We had more, even worse news coming, but our initial reaction was that we were the butt of a joke. My wife, who, either through shock or refusal to accept what she had just heard, misunderstood the meaning of the word malignant, and expressed this by placing her hand on her heart and thanking god. The oncologist, again in a blunt and cruel manner, told her that malignant was not a good thing.
I myself did all I could to get him to change his mind or admit that he was lying to us for some reason. In the end though we had no choice but to accept what we had just heard. We went outside and cried.
Over the next few days the news continued to get worse. Scans had shown that the cancer had done serious damage in its growth. Two ribs had been utterly destroyed on her right side, and one rib showed massive damage though it was still there. Three vertebra in her center back had been severely damaged to one degree or another and her lung was showing damage as well. The cancer had invaded her spinal column and was pushing against her spinal chord. Each report sent us further and further into despair, and while no one ever came out and said it we were convinced we were spending our last days with our daughter.
The doctors and nurses did little to help that feeling, though they did their best to stay positive. Jenny was fitted with a body brace that she would be forced to wear anytime she went into public. Treatments began at once and in an aggressive manner. Initially it was standard radiation treatments followed by cyberknife and chemo. Surgery was out of the question because the tumor was too close to her heart, lungs, and was wrapped around her spine. There was a sense of urgency, but no palpable sense of hope. The wait began, and while it was never characterized as a death watch there were times when it did take on that feeling.
The following months were strange. We had decided that we would not show despair or hopelessness in the face of this thing. When Jennifer was still in the hospital we instituted a new rule for our family that stated essentially, if you can not say it with laughter then do not say it. Obviously that is not always possible, but we did our best and it served us well. The darkness was always there, just under the surface but for the most part, in the beginning, the light never vanished.
It has been nearly three years since the journey started and I am happy to say that Jennifer is still with us and stronger than she has been in a very long time. Though not in traditional remission the cancer is not as active as it once was. She just finished her second round of chemo last month, and though there have been a few setbacks overall she is doing better than anyone ever expected. The aggressive treatments paid dividends early on when the cancerous fingers that had invaded her spinal chord pulled back and a majority of the overall mass liquified. There is healthy growth in her lung tissue and beyond all reason the bone damage seems to be repairing itself. There is still a very long and painful process ahead of us and nothing is set in stone. But as of this writing I am comfortable in stating that my daughter is a functioning cancer survivor.
Jenny's story only begins with what I just related. It is easy for someone who has never known someone with cancer to read about treatments and success and never know the reality behind it all. In Jenny's case, for every scrap of good news there was devastation to match it. After her first round of radiation and chemo the cancer went inactive. Six months later it was back and more aggressive. treatments made her so ill that she dropped under 100 lbs at one point, and mistakes made by nursing staff pushed her to the point of hallucination twice. As time wore on and the life of a cancer patient undergoing treatment began to reveal itself we needed intervention numerous times to prevent Jennifer from taking her own life.
As a family the struggle is different, but just as real. You battle with hope daily, never wanting to lose it but at the same time you try not to indulge it either. Our fear was that we would start to relax and get blindsided, so we strangely tried to find a balance between the optimism of wanting this to be okay and the pessimism of knowing what might happen. What we discovered is that you can not live your life based on a worst case scenario. This lesson manifested itself in two ways. First by nearly destroying our family, next by re-introducing us to God, and last by bringing us to the point of losing it all again because we, in our impatience, abandoned that same God.
You see, I decided to write this article not as a means of depressing people. I wrote it because underneath all the events of the last three years there is a truth that is hard to miss, but easy to ignore in favor of pain and anger. That truth is that miracles are not always what we expect. I am not a good Christian. I have fought with faith for many years, sometimes giving in to what I saw as the control of the spirit, other times slipping back to my agnostic days and despising God for allowing this unfair trial in my life. The upshot is that I missed a miracle that should have lead me to the truth inherent in the human condition. Instead I allowed it to lead me to near ruin.
If you read through the story above there is no doubt that you were thinking that after all that damage to her young body there is no way Jennifer would be able to lead a normal life. You are correct, she goes through things no young person should have to.
The consensus amongst her doctors is that the cancer had been growing in her body for years. In that time, as it destroyed her bone structure, Jennifer was an active and daring kid. She was in extreme dance classes and loved amusement parks and riding in anything fast. She wrestled with her brothers and did all sorts of things that we look back on now and cringe. Obviously not knowing what was growing in her means we could not know the potential damage it was doing, but hindsight can be cruel even if fault can not be laid at your feet.
Despite the damage to her body Jenny has never been in any serious pain as it relates to the cancer itself. After six months of wearing a body brace she got tired of it and refused to put it on anymore, disregarding medical advice and the fear of spinal collapse. In that time she has fallen numerous times and been in one car accident with no obvious impact. She even dances from time to time, swims, lays pool and bowls. She also does some alarming things in relation to her new love, photography, to get images she wants. Things that make me bite my lip in fear.
On top of that is the success of the treatments to this point. No one really thought she would survive this long, to say nothing of walking and doing all the other things she does. The tumor has shrunk in size and shows less activity than ever and she is healing.
Through all of this she has been the one to maintain the family. Upon learning she had cancer her first thoughts expressed fear over how we, her family, would survive her possible death. I for one would not expect a 17 year old child to ignore what such news meant for her in favor of what it meant to everyone else, but she did. This after a lifetime of illness that had just culminated in a slow death sentence. It was astounding.
Since then, with the exception of a few bad days, Jenny has not faltered. Through the financial problems we face to this day, the anger and the sometimes overwhelming desire to give up she has remained the example of strength and hope that we inevitable look to when things are at their worst.
The miracle that God is working within my daughter is not the kind of miracle that we look for every day. We are taught that miracles are good things that come to people in the most unexpected ways. We have a tendency though to see only the end result when a miracle happens and seldom understand that such a thing only happens after walking through darkness. What I have discovered, almost too late, is that gods works can be easy to ignore in that same darkness.
Though his hand has been on her since the beginning sometimes it is difficult to see it through scans and x-rays that are a constant reminder of what is happening to her. It is easy to miss Godliness when one is spending all their time asking how god could allow such a thing to happen. In my case I spent too much time blaming God, and demanding restitution for doing what he did to my life. In that, I missed the truth. I missed Gods message.
Jennifer, by her very existence, is a miracle.
