From Tragedy To Hope
By Jerry D. Haight
Vince Haight, a career submariner was aboard the SSN Miami on deployment off the coast of Southern Italy. In Warrick Rhode Island, his wife, Nancy, was just starting her day by fixing breakfast for the couple’s two children and later Nancy planned to go to work preparing tax returns to supplement Vince’s navy pay. She knew something was amiss as soon as their oldest son, four year old Ben appeared at the foot of the stairs. Normally the house shook as the exuberant lad charged down the stairs at top speed, jumping over the last four. This time, however, he was quietly clutching the right side of his abdomen, his normal smile diminished and there was a hint of tears brimming from his eyelids.
Nancy knew it was something serious and thought “appendix” as she loaded both children in the van and sped to the emergency room. After what seemed like an eternity, the doctor told her Ben needed to stay in the hospital overnight and undergo exploratory surgery first thing the next day. Still thinking appendicitis, she didn’t want to worry Vince and decided to let him know when it was over. After surgery, the ashen faced doctor laid the crushing news on her. Ben had type IV neuroblastoma engulfing his spleen, liver, upper lobe of his left kidney and lower heart. The devastating news was like unrelenting sledge hammer blows to her stomach, intent on her destruction.
Vince got the news from the captain of the Miami who told him he had already started the preparation for his departure. The submarine met a Kodiak, a kind of inflatable boat, from a frigate. Vince literally had to walk down the curve of pitching hull of the submarine and jump into the water and was pulled into the Kodiak. From the frigate, he flew by helicopter to Corsica, a Navy plane to New York and a commercial plane to Warrick. For the next five years, Ben’s cancer consumed almost all their resources, emotions, time and energy.
They came to know more about cancer than anyone should ever have to know. They saw their entire life engulfed by the schedules dictated by the twists and turns of the fickle cancer taking on many forms and attacking in varied ways as it sought to take the life of their son. Their lives turned on terms like surgery, chemo, radiation, bone marrow, platelets, white cell count, remission and metastasis. They came to know names like The Tomorrow Fund, Jimmy Fund and know the insides of hospitals like Hasbro and Boston General to the point where these institutions became like their second home. They spent countless hours waiting rooms, holding their breath for the next test results, cell count, another treatment, a promising breakthrough, or a new medication. New hope spawned, cresting like a wave, only to be dashed in the abyss of disappointment. But, they also learned about character traits displayed in their son like courage, tenacity, singleness of purpose, empathy and marked determination as he fought his battle against cancer. Later they realized the phenomenal number of people Ben would influence, and their son hailed as a hero in the records of Congress and come to the attention of the President of the United States and their destiny was to play an important role in a larger sense in an even larger war. But during the ordeal, their future was tenuous and uncertain as the cancer was a constant threat to their son’s life.
Ben was a remarkable young man indeed and in all respects a hero as are so many of the children having suffered and continue to suffer from cancer. He fought valiantly, enduring years of chemotherapy sessions, total body radiation sessions, two bone marrow transplants, endless successions of platelet infusions and blood transfusions.
But the lad never let cancer stop him from living life. While in the hospital for treatment, the boy played games like hide and seek with his nurses and challenge his doctors to video games (and more often than not he won). His effervescent grin always dominated his environment and later became his trademark. He fathomed what was really important in life and had little tolerance things superfluous or trite. In boldness his treatment schedules were dictated to staff with no ifs, ands or buts: “No treatments during science class; have to be out by 3 for Cub Scouts, baseball, or Ugio Club.'' The chief pediatric oncologist at Hasbro later said with tears in his eyes, “he taught us how to balance the needs of treatment with quality of life; both extremely necessary in dealing with children with cancer”.
This young man also cared about others and wanted to help. He unilaterally held a band aid drive at school to donate colorful band aids to the hospital. They used plain band aids to save money but Ben knew patients enjoy picking out a “cool'' band aid and this simple pleasure offered them a brief respite from the rigors of their disease. He was just 9 years old when he died in Vince’s arms as he attempted to breath life into the cancer ravished body of his son.
Vince and Nancy served our Nation in uniform for twenty five years but now turn a tragedy of tragedies into a battle against cancer in Ben’s name. They experienced how a pediatric illness affects the entire family and how even those who don't bear the damage of the illness bear the pressures, the strains, and the frustrations over dealing with the serious illness of a child. With their intimate knowledge and the example of their hero, they serve as advocates of cancer related causes. Last year they were invited by the Director of Social Security to give testimony as to the need for expeditious handling of disability claims for families with child victims of cancer. They explained how disruptive a cancer diagnosis is to the income of a family because of the demands of their child’s treatment. Taking two or more years for the Social Security Administration to process the claims for these families is unconscionable to say the least. The delay often causes bankruptcy adding to an already unfathomable burden.
Just before Ben died, his family enjoyed a very special activity together-
An important weapon of a cancer patient is blood and its derivates. Cancer patients require lots of blood in the form of whole blood, plasma and platelets through the course of their treatment. Bone marrow, a part of blood, is also used to strengthen the system to help fight the disease. Blood must come from donors while bone marrow can come from either donors of the same type as the patient or in some cases from the patient. While at the clinic with Ben, Vince and Nancy observed some thirty to fifty other patients also receiving transfusions of one kind or another. Realizing the need for large quantities of blood, the grateful parents hold an annual blood drive and marrow registration in their son’s honor. The next one occurs on December 4 (tomorrow).
While dealing with Ben’s cancer, Vince and Nancy became increasingly aware of the broader scope of the fight against cancer and began seeing it as warfare. In fact, in 1971 President Nixon spoke about “declaring war” on cancer as he requested an additional $100 million for cancer research. They learned much about the state of our nation’s war with cancer and while much has been accomplished in the areas of Leukemia and more specifically Leukemia in children, cancer is the second leading cause of death after heart disease. It is the primary cause of death in women between the ages of 35 and 74 and is the chief cause of death in children between the ages of 1 and 14. As current trends continue, cancer in general will be the leading cause of death next year claiming over 350,000 people including about 9,500 children.
The couple discovered of the $170 million spent by the National Cancer Institute (NCI) on laboratory research, very little goes toward clinical trials. Obviously, it is important to test treatments in a test tube, Petri dish, or on animals, but it is equally important to test treatments on humans in clinical trials. For example, recently a clinical trial found less intensive chemotherapy is as effective for children with neuroblastoma as more intensive and toxic chemotherapy. Once sensitized to this issue, Vince and Nancy took it upon themselves to become a voice for funding these trials. One fruit of this cause is The Conquer Childhood Cancer Act of 2008 authorizing the investment of $30 million each year for the next five years to expand pediatric cancer research and develop pediatric cancer clinical investigation. This bill also creates a national childhood cancer registry to track pediatric cancer. Through their effort, researchers will soon be able to contact patients within weeks, enroll them in research studies, and follow up with them over time.
Moving any bill through Congress requires a Herculean effort. They started their effort five years ago and were later joined by Rob and Rachel Byers of Oregon, parents of Jennifer, another cancer worrier. The progress of the legislation gained momentum when Senators Jack Reed of Rhode Island and Ron Wynden of Oregon became joint sponsors.
There is an entry in the Congressional Record of February 25 2008 by Senator Jack Reed of Rhode Island: “Mr. President, I wish to make a few comments. Today, I rise to honor two young heroes and their families. Ben Haight of Rhode Island and Jennifer Byers of Oregon who are two remarkable young people whose lives were cut short by cancer, but whose hopes were not. I noticed the warriors in Jennifer’s drawing at the White House. My hope is one day the President in the White House will sign this bill. She and Ben will be there in spirit because they are the warriors, and the young men and women who are helping us in our mission.”
It was a great day in July 2008 as the bill finally passed both houses. In the Oval Office there was a great celebration as President George Bush signed it in the presence of Laura Bush, Senators Jack Reed and Ron Wynden, Vince and Nancy Haight, and Ron and Rachel Byers. The small congregation rejoiced that out of the tragedies there is the prospect of new hope in the fight against cancer as a result of this legislation. Surely Ben and Jennifer were there in spirit.