Katy Ault Phillips Melanoma Foundation

We recently donated UV Skinz products to a fundraising event recently held by the Katy Ault Phillips Melanoma Foundation. Katy Ault Phillips leaves behind her memory and has inspired her family to honor her name with Melanoma awareness.
This is Katy’s story told by her sister, Emily…
It all began when Katy had a Melanoma removed from her skin in 2008, and was diagnosed as benign, so no further surgery was done at that time.  However, we now know that it was misdiagnosed at that time.  In 2009 she found a small lump around her collar-bone.  It was removed and diagnosed as Melanoma.  She then had further surgery to remove surrounding lymph nodes.  The Melanoma was found to have traveled to her lymph nodes so at that time she was diagnosed as Stage III Melanoma.  She began a vaccine clinical trial but soon after she found another lump, which was Melanoma, so she was no longer eligible for the trial. After surgery to remove that tumor, she started Interferon.  She did one month high dose interferon and then did 5 weeks low dose where she gave herself injections before finding another tumor on her upper arm.  That was surgically removed and she then had follow-up scans.  These scans showed the melanoma had spread to her lungs and liver, so at that time she was diagnosed as Stage IV.

What did treatment look like for Katy?

Katy was actually involved with several different treatment facilities.  She started the vaccine clinical trial at Barnes Jewish Hospital in St. Louis, MO.  She also had one surgery and follow-up at this facility.  She did the Interferon in Springfield, MO where she lived at the time.  After being diagnosed as Stage IV, she was referred to National Institutes of Health (NIH) in Bethesda, Maryland.  There she did another clinical trial with Interleukin plus an antibody.  In addition, their initial scans showed a small spot on her brain, so they did a high dose targeted radiation treatment called Stereotactic Radiosurgery before starting the clinical trial.  Unfortunately that clinical trial was also unsuccessful.  They also removed a tumor at NIH in an attempt to grow t-cells to be implanted back into her body.  However the cells did not grow so she was not able to complete that procedure. She had a second Stereotactic Radiosurgery at NIH, after which she went to University Hospital in Cleveland, Ohio to do another clinical trial, Ipilimumab (Ipi), which is now an approved drug (Yervoy) for melanoma patients.  In addition, she had multiple gamma knife treatments for brain tumors while she was in Cleveland.  Unfortunately the Ipi also did not work for her, so she began another trial in Detroit, Michigan at Karmanos Cancer Institute with a drug called Zelboraf, which is also now an approved treatment.  This treatment worked for about 11 months, but eventually stopped working.  Through this, she still also remained a patient at University Hospital in Cleveland.  She had also had some minor seizures caused by the brain meds.  However, in late March of 2012 she suffered a more severe seizure, and was admitted to University Hospital in Cleveland, Ohio.  She never fully recovered from this seizure, although she was able to communicate, walk with a walker, and go home.  She was placed on Hospice in mid-April 2012, which was a wonderful service because she was able to be in the comfort of her own home.  The nurses were great and they were able to get her the home medical equipment she needed very quickly.  She passed away at home surrounded by family and friends on April 24, 2012.

What was her experience at her treatment facilities?

The doctors at the various hospitals at which she was treated were helpful in that they were always willing to discuss other options, regardless of whether they had those treatments at their own hospitals.  They offered her options for different clinical trials for which she would qualify even though it often meant she would be referred to another hospital. In addition, Hospice was amazing, the nurses were all wonderful and caring, they brought in the equipment she needed to be at home, and they gave her the opportunity to remain comfortably at home until she passed away.

How was the Katy Ault Phillips Melanoma Foundation created?

The foundation was born out of Katy’s desire to put other’s needs before her own, and always wanting to help others.  Friends and family wanted to have fundraisers for Katy when she was sick, but she always felt uncomfortable with it and was more worried about helping others than asking for anything for herself.  From that, her family decided that we could raise money in her honor to raise awareness about melanoma and to help melanoma patients who need financial assistance.  We were able to discuss it with Katy in early April of 2012, just weeks before she passed away.  We wanted to make sure she knew we were planning to do this in her honor and to help others in her name, as that was always her desire.  Our mission is to provide financial assistance to Melanoma patients and their families, while also educating the public about the dangers of Melanoma and the keys to prevention.
 Through our efforts, we hope to be able to alleviate some of the stress on patients and their families while they go through a very difficult time.  Melanoma is a horrible disease, and it is a very scary disease to have to fight.  There are not a lot of treatment options, and sometimes treatments are only offered at certain hospitals in certain parts of the country.  We hope to help patients who may not have the financial resources to travel to be able to be treated at other facilities, by providing financial assistance with travel for treatment.  In addition, we have helped patients get through a difficult time financially, for instance they cannot work for a period of time because of surgery or treatment, and just need some small financial help as they go back to work to get them through that rough patch.  In sum, our hope is to help alleviate some of the financial stress that befall Melanoma patients and their families because they are dealing with so much going through this, and if we can help in some small way, that is our desire.  On top of that, we also hope to spread awareness of Melanoma and the dangers of tanning, providing education and information on prevention and early detection.

What is your greatest source of inspiration?

To be honest, Katy is my inspiration more so than anything else.  Through almost three years of treatment, scans, side effects, and frustration, Katy never gave up, never complained, never said why me?  She was the strength for all of us who love her.  She was someone you loved to be around and everyone who met her liked her instantly.  She was a truly happy person who was incredibly caring and always wanted to help others.  Though I miss her everyday, I know that she would not want us to be depressed and sad and moping around missing her…she would want us to live our life and enjoy it, so that is what keeps me going.  And her friendliness and positive attitude is what I try to exhibit in my life as well.
There are also some inspirational quotes that I find helpful:
“Those we love don’t go away, they walk beside us every day,
unseen, unheard, but always near,
still loved, still missed, and very dear.  –Annonymous
Two quotes that Katy had in her home-“Dream like you will live forever….live like you only have today.”
“God doesn’t give us what we can handle.  God helps us handle what we are given.”This quote from Katy’s Caring Bridge page-“Cancer cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.”

What advice can you give to someone that thinks that Melanoma can’t happen to them?

 My advice is that it can happen to anyone at any age.  And I would also advise them that Melanoma is so much more than just skin cancer…it is the deadliest form of skin cancer and can and does spread throughout the body.  Oftentimes people associate cancer as a disease that young people don’t get, but Katy was only 27 when she was diagnosed and 30 when she passed away.  And unfortunately that is not a rare case, as Melanoma is becoming more common in younger people, especially young women, and I cannot help but think that is related to the increased use of tanning beds in our generation.
Some facts I would also share with them from Melanoma Research Foundation (MRF):
  • Every hour of every day someone dies from melanoma.
  • Melanoma is one of the fastest growing cancers in the US and worldwide.
  • Melanoma is the 2nd most common cancer in those ages 15-29.
  • The incidence of people under 30 developing melanoma is increasing faster than any other demographic group.
  • Exposure to tanning beds before age 30 increases a person’s risk of developing melanoma by 75%.
  • The World Health Organization’s International Agency for Research on Cancer reclassified tanning devices into the highest cancer risk category (carcinogenic to humans).
katy_ault_phillips_melanoma

Preparing your child (and yourself) for a Dermatologist Appointment

The number of Caucasian children 18 and under (as young as 2-years-old) who develop Melanoma is on the rise. From 1973-2009 more than 1200 children were diagnosed with Melanoma. Diagnoses like these have shown an increase of 2% a year. Melanoma is an the most aggressive form of skin cancer. If caught early there is a good chance of survival, but if left to spread it can be deadly.

What could cause childhood Melanoma?

  • Sun sensitivity disorders
  • Mom-to-infant transmission
  • Tanning bed use (teens 14-18 years old)

Sometimes children can develop Melanoma or skin cancer because they exhibit some of the high risk factors; a large number of moles, family history, fair-skinned, and blue eyed. As with most illnesses sometimes there is no reason at all. No matter the cause, early detection is important. Children (as well as adults) should have a yearly Dermatologist appointment. People with a family history of Melanoma and atypical moles should be examined every 3 to 6 months. Children in these families should have their first exam by the age of 10. 

Treat a Dermatologist  appointment like a yearly Pediatrician wellness check-up.

Steps to a successful Dermatologist appointment:

  • Talk with your child about who a Dermatologist is; let them know that a Dermatologist is a doctor who knows a lot about skin and how to keep our skin healthy.
  • If you don’t have a Dermatologist the American Academy of Dermatology provides a quick and easy Derm Finder.
  • When contacting your doctor to arrange a total body skin examination, you should request an appropriate amount of time for the appointment with the scheduler.
  • At the time of arrival, when placed in the room, and when first greeting the doctor, you should make your desire for a total body skin examination known, including a request for a gown if one is not provided.
  • During a skin cancer checkup or “screening,” your doctor will probably discuss medical history and inspect your child’s skin from head to toe-even areas that don’t get any sun. If your doctor performs only a waist-up exam, inform him/her that you would like a complete skin exam.
  • Your doctor will record the location, size, and color of any moles.
  • If a mole looks unusual, he/she may arrange for a biopsy.

doctor-with-patient-child

Through out this whole process you (as a parent) have the option to be present during the appointment, ask questions and to voice your concern. 

Studies have shown that doctor’s instructions may help young people understand that sun exposure and tanning harms the skin. The message of sun safe habits should begin early and the message should  be frequent.

Source: Aim at Melanoma

Prevention News: Teens Create A Sunscreen Reminder

29-TDN-AJ-EXP

These two New Zealand teens have created a visual reminder to reapply sunscreen in hopes that their efforts will raise awareness about skin cancer and Melanoma.  Danielle Watt and Sarah Mount are participating in a school program called Young Enterprise. Taking sun safety into their own hands they created the Exposure Band, which looks like a rubber watch. The Exposure Band is a sensor that changes color when the wearer needs to apply more sunscreen. When the wearer applies sunscreen to their skin they also apply the same amount to the face of the band. As the sunblock wears off of the skin and the band the Exposure Band changes color (from white to bright yellow) alerting the user that it is time to reapply! The bands come in 7 colors and are made for kids and adults. For now these bands are only being sold on their Facebook page. The teens will be donating the sales to the Skin Cancer Foundation. (Source: Brisbane Times)

This cause hits close to home because they have both known someone diagnosed with Melanoma and live in a place where skin cancer is the most common cancer. In New Zealand, new skin cancers total about 67,000 per year, compared to a total of 16,000 for all other types of cancer. There is a one in 17 chance that a person from New Zealand will develop Melanoma. It is not just affecting older people, but it is quickly becoming a young persons disease–Melanoma is the most common type of cancer for 25–44 year old males (17 deaths in 2004) and 15–24 year old females (12 deaths in 2004). (Source: Science Learning)

Many people believe that putting their sunscreen on once a day will protect them from skin damage, UV exposure and ultimately skin cancer. This is not true. Sunscreen must be reapplied at least every two hours, less when in and out of the water. Wearing a wide-brimmed hat, sunglasses, UV protective clothing and avoiding the peak hours of the day are also other ways to protect your skin from sun damage, sunburn and skin cancer.

Wearing Exposure Bands would be a fun way to keep track of sun exposure and a subtle reminder to reapply sunscreen.  Children would especially benefit from this product; giving them independence in their own sun safety with less nagging from Mom to put on more sunscreen!

Would you wear one?