52 People You Need To Meet: #24 Beni Hood Fries

I am always intimidated by having to express into written word how I feel. I often feel that my words are inadequate; however, I was deeply honored when asked to share David’s and my story and to contribute to the poignant, powerful and touching blog “52 People You Should Meet”. The question posed to us was,” What I wish I had known?” This is obviously a very thought provoking question and not easy to answer.

David and I were married at the age of 21. I can honestly say that we did not know much at that time in our lives; however, being young, dumb and in love, we were sure that we could conquer the world. We did not exactly conquer the world, but we did build a good life. Over our 27 year marriage, we raised three children, adopted a few pets, learned many lessons (sometimes the hard way), made multiple moves, made many friends, shed a few tears and had many, many good laughs. Although, our life was not perfect, it was more than good, and we were most definitely happy. I knew that we were blessed. In the spring of 2007, our world literally crumbled around us. I do not think that anything could have prepared our family for the road that lay ahead of us.

In early April of 2007, David started to experience an odd warming or tingling sensation in the right corner of his mouth and the pads of his thumb and forefinger of his right hand. They were infrequent in the beginning but over time increased. The first time he told me about it, I actually laughed at him. I wish I had known that something so innocuous and seemingly benign were actually focal seizures. Those sensations were the first known signs of David’s brain tumor. It took until June before we knew what we were dealing with.  I can say with confidence that knowing about the brain tumor earlier would not have changed David’s outcome; however, the complications from surgery may have been less had the tumor been smaller when it was removed.

When David was first diagnosed with the brain tumor, I thought the worst of the worst had happened. I was wrong. In November of 2007, a virus settled in David’s spine and left him paralyzed. Although unusual, this was probably caused by his cancer treatment. He spent the next three months in three different hospitals. I watched horrified as my husband’s dignity was stripped from him. I spent countless nights sleeping in hospital chairs and learning how to care for a paralyzed patient. I was able to bring David home in February of 2008 and did my best to care for him. It was a privilege and honor to be David’s caregiver, but it was the hardest thing I have ever done in my life. I watched helplessly as he lost hope and became weaker each and every day until he died on July 19, 2008. It was gut-wrenching. I have said multiple times that had I known that he was going to spend his last days and months paralyzed and miserable, we would not have done treatment after his surgery. Instead, we would have just enjoyed what little time we had left together. With that said, I am not sure that it is possible to enjoy time with a loved one while waiting for them to die.

So many times, I have asked why? Why did a good man have to get sick and die? The answer has to be, why not? I drove myself crazy trying to understand how a young, vibrant, active and healthy man, could get so sick with brain cancer. Did he eat something? Was he exposed to something?   The truth is we will probably never know those answers. Life is not always fair, and really bad things do happen to really good people. I have also asked more times than I can count, did we do everything we could to save him? And yes, we did. We sought the best treatment from one of the best brain cancer centers in the country. David had Glioblastoma Multiforme which is the deadliest form of brain cancer there is. There was no cure for it then, and sadly, there is still no cure for it.

“What I wish I had known?” After thinking long and hard on that question, the answer is nothing. Life is not meant to have a crystal ball.   I personally think that knowing ahead of time about the wonderful surprises we will experience during our lives, will only dim their joy. And I think knowing ahead of time about the horrible things life will hold for us, will only paralyze us and prevent us from living fully and experiencing all the joy we can. As cheesy as it sounds, life is meant to be lived wholly and completely, and that cannot happen if we know what life will hold for us.

After David had died, it was almost impossible for me to wrap my head around the fact that the world kept going virtually unaltered, and my life was in pieces around me.   The pain was so intense that it literally took my breath away. The visions of that thirteen-month nightmare lived with the kids and I for months and even years. In fact, for a time, I was afraid that I had lost the previous 26 years because all I could see was the nightmare of the last 13 months of David’s life. Thankfully, over time, the good memories did return. I can say that, for the most part (we still have some bad days), the kids and I are doing well now. It has not been an easy road, but we have learned to experience and treasure life’s joys again. We have also learned not to feel guilty about it.

I always knew that David and I were blessed (and I still am) with an amazing family and wonderful friends. I will never be able to pay forward all of the love and kindness that was shown to us during David’s illness and the years following his death. My kids and I were shattered and shut out much of the world around us. Fortunately for us, our family and friends showed a lot of patience and did not give up on us. They were waiting when we were ready to join the world again.

We miss David each and every day, and it is not necessarily worse during holidays or special occasions. Although days like today, Father’s Day, still sting a lot. David was an amazing dad and loved his children tremendously. I have no doubt that David looks down on his adult children with nothing but pride. I see a piece of their wonderful dad in each of them and that brings me tremendous comfort. This is the sixth Father’s Day our children have had to whisper “Happy Father’s Day” to their dad and hope he hears. I know he hears…

With David Always in my Heart,

Beni

Editor’s Note: This post is about David Fries, Beni’s husband. It is not the same David that is mentioned in normal blog posts. David Pearson is my son’s name. Sorry for any confusion. – Amanda

52 People You Need To Meet: #3 Danae Hischke

What I wish I had known before my son was diagnosed with cancer.

My oldest son, Jordan, was diagnosed with a Spinal Cord Glioblastoma when he was 22 years old. Chances are you’ve never heard of it. It’s one of those “rare” cancers that few doctors, even oncologists, ever encounter in their careers. Jordan also had moderate/severe autism. My husband and I were not new at advocating for Jordan’s needs but I wish I had known, could somehow have been prepared, for how much farther we would have to go after he received a rare cancer diagnosis.

I’ve worked as a primary clinic nurse for 30 years so I’ve seen a lot over the years. Nothing prepared me for being the mother of a child with cancer. I wish I had known how much I would need to trust my instincts, my gut feelings…

Our cancer journey started in January of 2009 when Jordan seemed to have some difficulty with his left ankle. It was difficult to step up into the school bus or our van. We took him to our doctor who x-rayed his ankle and thought maybe it was sprained. A week later Jordan was saying that his knee hurt. Another trip to the doctor and another “clean” x-ray. A week later and my food loving son is refusing to walk to the cafeteria at work. January 20th was his last day of work and also mine. We took him to the Orthopedic specialist we had seen in Milwaukee for an unrelated problem. At this point he was in a wheelchair because he couldn’t walk without holding onto the wall or a person. Blood tests, bone scans, x-rays. Everything “normal”. So our family is at home with a young disabled adult man who can’t walk. But everything is “fine”. On February 4th, when my 200 lb husband had to carry my 180 lb son down the stairs we were at our wit’s end. We drove to the ER (again!) and were determined to stay there until we were given answers.

With the help of Jordan’s old pediatrician, he was admitted to the neurology floor with a diagnosis of Guillian Barre Syndrome. It made sense. He had ascending paralysis and protein in his spinal fluid. Three weeks in rehab and during that time Jordan completely lost his ability to walk. He also lost control over bladder function. We still didn’t question the professionals. Soon after he lost bladder control, we were released home to continue rehab. At this point Jordan was in a lot of pain but the “experts” told us Guillian Barre Syndrome isn’t painful so Jordan must be faking the pain to get out of therapy! Alan and I should have known better. Jordan had always had an incredibly high pain tolerance. He displaced his elbow when he was 3 – without crying. He had surgery to remove part of the bone in his arm and needed no pain meds after – and no crying. So now he’s crying and saying his hips hurt and we are told he’s “faking” and to just give him Tylenol.

Jordan’s diagnosis of spinal cord cancer came in March of 2009 after an MRI of the spine was finally performed. Surgery to hopefully remove the tumor was scheduled for the next day. It was too late for his mobility. He was permanently paralyzed from the waist down before he went into surgery. Fortunately, we had an incredibly compassionate and caring neurosurgeon who delivered the devastating news to us that our son had a tumor that could not be removed, only biopsied. Not only would Jordan never walk again, but he would be lucky to live a year. Most likely scenario would be that the tumor would continue to grow up his spine (it started in the lower lumbar region), and he would gradually experience more paralysis – and excruciating nerve pain as this occurred. So much for “just Tylenol”.

We were very fortunate in one sense though. We had a neurosurgeon and a neuro team who gave us the knowledge we needed to start advocating for the best care possible for our child. We were encouraged to search for second, third, even fourth opinions. Given the terminal nature of the disease it was gently stressed to us how important it would be to weigh quality of life against quantity.

I need to say that after those first couple months, after the real diagnosis, I have no regrets in the care Jordan was given and the advocacy our family did on his behalf. A lot of the credit for that goes to the incredible medical professionals that we encountered throughout what turned out to be a 3+ year journey. They helped us every step of the way in determining what was right for Jordan and what was right for our family. There were a couple professionals (doctors, therapists) who didn’t make the cut and needed to be “let go”, but just a couple and it was easy to cut them loose! They didn’t fit into our plan for what we felt was right for Jordan.

When it came to anything Jordan related we learned to trust our instincts, trust our gut, trust each other, trust God, and research, research, and more research. Jordan died peacefully and pain free at home on June 24th, 2012 with family and friends near his side. He lived and died on his own terms with help from a great team.

Always Jordan’s mom,

Danae