Help Violet's Fight Against Cancer

For the past year, ten year old Violet King has been bravely fighting a terrible cancer.  Her father has put everything on hold and has been amazing in his steadfast care for his daughter.  But the toll on the family has been profound:  it has impacted them in every way, including financially.  We are raising funds to help cover the costs of Violet's care that insurance does not, and to help pay for caregivers at home when needed - to ensure that Steve is able to go to work when he is not at the hospital.  Please consider donating generously to help this little girl and her family, engaged in what is literally the fight of her life.  Below is the story of Violet's fight, told by her father, Steve King:

“Daddy, am I going to die?”  Not exactly a question I had ever given even a moment’s thought to ever having to answer, Violet caught me completely off guard that night.  I don’t even remember my response. In my ill-prepared haste, I am sure I fumbled it. August 31, 2018, Violet’s 10th birthday, a day intended to be one of fun and celebration.  Those thoughts ended abruptly at 4:45 p.m. that afternoon. An incredibly cruel irony to receive MRI results indicating a tumor. On her birthday. Two weeks later, a percutaneous biopsy confirmed even worse news.  Alveolar Rhabdomyosarcoma. It took me a few days to learn to pronounce correctly; it took many more days to utter these two words without tears streaming down my cheeks as I came to learn what they meant for Violet.  A soft tissue cancer, rhabdomyosarcoma tumors typically form attached to muscles in extremities, but can form anywhere in the body. Violet’s tumor first appeared as a small bump the size of a pea, in the web area between the thumb and index finger of her left hand.  To my untrained eye, I initially thought it likely to be a cyst, nothing to be overly concerned about. And due to some very poor early direction and lack of correct initial diagnosis by the trained eyes of three different medical professionals, precious time was lost, leaving Violet with the fight of her life.

Pediatric cancers are seldom if ever a result of lifestyle or environmental exposure.  There is nothing Violet did to get alveolar rhabdomyosarcoma (ARMS). There is nothing she could have done to not get it.  It is purely the result of a genetic malfunction, not yet well understood. She could have received a problem gene from me.  She could have received a problem gene from her mother. Her mother’s genes and mine could have combined in a way that caused the problem.  The gene malfunction could have happened entirely on its own. About 15,000 children will be diagnosed with cancer in the U.S. this year. Of those cancers, rhabdomyosarcoma is not too uncommon, comprising about three to four percent of cases.  The ARMS version, however, is very rare. Literally less than one in one million children will ever be diagnosed. Her oncologist describes it as ‘aggressive’. If caught and treated early enough, the general statistics for ARMS indicate a five-year failure free survival rate (FFS) of 65%.  If there is spread, the five-year survival rate drops below 20%. ARMS has a 50% rate of recurrence.
 
Google is a wonderful tool to research and learn about that which you do not know, except when you find things you wish you didn’t.  I came across a Mayo Clinic study from 2004. The study looked back 30 years, specifically at ARMS cases where the tumor was located in the hand or foot.  They identified 52 such cases. For these 52 cases, the median survival time beyond initial diagnosis was 19 months. The five-year FFS rate was 27%. I hoped those statistics might be dated.  Surely there have been improvements in the treatment. There haven’t. The same chemotherapy protocol has been used since the 1970’s to treat ARMS. There have been periods where a fourth chemo drug was added to the standard three-drug treatment, but without any improvement in outcome.  According to Violet’s oncologist, pediatric cancers are treated differently than adult cancers, with much heavier doses of chemo versus a child’s body weight than given to adults. This approach relies on children’s young immune system ability to recover better than adults. The oncologist’s words; it’s like aiming a bazooka at the child’s cancer.  And the children suffer mightily as a result.

Violet’s treatment plan:  43 weeks of weekly chemotherapy, 28 radiation treatments, surgery, and six months of ‘maintenance’ chemotherapy.  In September of last year, she had a catheter port surgically implanted in her chest for delivering chemotherapy. Once every three weeks she receives three chemo drugs in one session; vincristine, actinomycin and cyclophosphamide.  This is a very difficult drug combination, administered in the hospital with an overnight stay required. The overnight stay is required as they administer a half-dozen different nausea medicines intravenously before, during and for at least 12 to 16 hours afterwards to attempt to control the nausea.  They also keep Violet on a continuous fluid IV for 16 to 18 hours to keep her bladder flushed out, to (hopefully) avoid the bladder damage that can be caused by cyclophosphamide. It makes for a long couple of days. The other two weekly treatments are out-patient, single doses of vincristine. Vincristine causes severe constipation requiring routine doses of medicines to overcome.  It also adversely affects motor skills; simple things like holding a spoon, holding a pencil, correctly putting one foot in front of the other to walk, all become extremely difficult.

Cancer cells divide, reproduce and grow in an uncontrolled manner.  Chemotherapy drugs are intended to kill these fast growing cells. An unfortunate side effect is they also kill ‘good’ fast growing blood cells, leaving the body very vulnerable to any sort of infection.  Violet has had many, many red blood cell and platelet transfusions to help her body recover from chemotherapy sessions. Anytime her temperature rises above 100.4, she has to immediately go into the hospital (even if during the middle of the night, which it has been on several occasions) for IV antibiotics and testing/monitoring for evidence of infection.  Thus far, Violet has spent almost 70 days in the hospital as a result of the chemotherapy. The low point came over the Christmas holidays. She spent 11 days in the hospital; fever above 102 to 103 degrees; nausea, terrible diarrhea; most of her major internal organs were swollen; her stomach distended from fluid retention. Violet spent all of Christmas day, night and part of the next day in intensive care; due to the degree of irregularity of her heartbeat, they were very concerned about cardiac arrest.  She was connected to four IV’s; two through the catheter port in her chest, two into her arm; six heart monitor electrodes on her chest and abdomen. Dozens of trips to the bathroom with all of these IV’s and wires in tow. Merry Christmas. Countless tests, exams, x-rays and ultrasounds did not determine a specific cause; thankfully, on day nine her fever broke and symptoms abated; on day 11 she was able to go home. I had no idea this process becomes as much about surviving chemotherapy as it is about surviving the cancer.

Violet had 28 radiation treatments applied to the tumor; five days per week over a five and one-half week period during February and early March this year.  The original plan was to surgically remove the tumor after completion of radiation. Unfortunately, a follow-up MRI one month after radiation showed that, although the tumor decreased in size, the decrease was not sufficient to allow, as the doctors called it, “a clean resection without morbidity”.  In plain English, that means the tumor could not be removed completely without also removing her thumb and index finger. Surgery has been postponed, to be reevaluated at completion of chemotherapy.

Violet has entered a world that I, frankly, had no idea existed.  I have seen suffering that just should not happen to anyone, much less children.  I had no idea. I have seen dozens of parents with the ‘thousand mile stare’, I guess I have it too, as together we stare holes into the floor of the hospital elevator in silence.  I wonder how they are coping with their child’s cancer. I have seen frail two-year olds with no hair, pushing a baby stroller down the hospital hallway, connected to an IV being pushed along by their mom or dad.  I did not know you could be born with cancer. I do now. Newborn babies, their arm in a splint with an IV attached. I often hear them crying for long periods of time during the night at the hospital. How does a new parent cope with that?  I now know what a hospital ‘code blue’ is. Two doors down from our room at the hospital one afternoon. I saw the unforgettable look in the eyes of half a dozen nurses as they ran toward the room. It was an infant. Thank God, they were able to revive the baby.  What kind of indescribable horror was that for the parents to witness? Sitting in the waiting room at the Children’s Oncology Group clinic every week I can, unfortunately, easily spot the children and parents who are there for the first time, about to receive news that is going to turn their world upside down.  It’s heartbreaking. Truly, absolutely heartbreaking.

But then, amidst all this bad, there is the undeniable, unwavering, unending goodness of the love and support we have received from Bryker Woods Elementary School; the students, the parents, the PTA, the staff.  I have been absolutely overwhelmed by the cards, the banners, the gifts; there are not enough superlative words I could use to describe how wonderful you all are, and how much it means to us. I am blown away by the beautiful notes and cards Violet has received from Bryker Woods students.  Parents, you can be very, very proud of your children. And, proud of yourselves; surely the goodness of the students is a direct reflection of the goodness of their parents. So many of you have given so unselfishly. We have received very, very generous gifts from so many of you that we have never met,  I can’t say thank you enough, I can’t say thank you in person, but I hope you will receive this message of how grateful I am. There is no question you have helped us; cancer upends every aspect of a family’s normal life, not the least of which is the financial devastation. I feel badly that I do not even know the majority of you who have been so generous to us.  Thank you all. 

As I finish writing this and reflect on my daughter Violet, now with no hair, no eyebrows, no eyelashes; scar tissue on her chest from weekly sticks of a thick 1-½ inch long needle into her chest to access the catheter port implanted to deliver this poison called chemotherapy directly into her aorta; a plastic tube sticking out of her abdomen for delivering nutrition and hydration as the chemotherapy has killed her appetite and taste buds; scars on her hips from bone marrow biopsies, a scar under her left arm from lymph node removal; discoloration on her left hand after the radiation burned off a layer of skin; one crystal clear thought comes to mind:  Violet is my hero. Absolutely my hero. To endure this unimaginable suffering, loss of privacy, loss of dignity, and to keep fighting. Violet is my hero.
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Organizer and beneficiary

ZfZmBRWWAm/XU78xvQn9OEXdL2k1qKwzrJejRftPiMQ= Van Slyke 
Organizer
Austin, TX
Steve King 
Beneficiary
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