MY Story; Tina’s Place

Tina5 logoA safe haven was created out of a heartbreaking tragedy. This is Tina’s story…

What type or stage of cancer did your loved one have?Tina1

Tina had a mole in the middle of her back. By the time they found it, it was stage 3 Melanoma.
 
What was the primary cancer treatment facility involved in your loved one’s care and what was your experience there?

Tina  worked with Dr. Hersh in Tuson for the largest part of her treatment. Tina was in the Cancer center for IL2 in Tuscon and they where amazing. The entire staff well-trained and the care was the best I’ve ever seen. Tina at first was very happy with Dr. Hersh than thought and found he didn’t seem to be keeping up with what was happening with the new Melanoma trials and treatments. So she started seeking other doctors. She became stage four in 2008 and then the Melanoma moved into her kidney and it had to be removed. They where not able to remove all the melanoma and she needed a miracle and then found a trial in Phoenix with Dr. Gordon for B-raf drug and decided to move there and give the new drugs a test. Dr. Gordon office was really good with Tina while she was doing well in the trial. But once she failed, so did he, leaving her with nothing until we pushed and placed her in the hospital.  Dr. Gordon was not totally present for her care. He failed to finish the journey but rather left her in the dust. When you are down everyone needs a doctor that stands Strong with them through the good and the bad. The hospital in Scottsdale Shea the nursing was top-notch “Kelly Hilcove” the best and most of the doctors where very kind and caring.
What organizations were the most helpful to you?

I didn’t know of any organizations that reached out to Tina through out her journey. Even though she blogged her entire journey. Today I read and hear about many organization helping Melanoma patients. Which I think Tina would have found very helpful and heart warming.

What would you say was the most impactful experience from the treatment of your loved one?

This question is the hardest of all to respond to. During Tina’s treatment watching her become more and more in touch with God was amazing and even that word doesn’t do it justice. The closer she came to going to heaven by this I mean the last few months. I watched a mom who was tied had her daughter on her hip more than not, slowly let that little girl go closer and closer to her daddy. This meant she fell farther and farther from her mommy loving arms. Tina was one brave mom and this mom shed many tears watching this take place. Tina never spoke of what she was doing; I just knew as a mom what she was doing. She was allowing her daughter to become detached from her and attached to her daddy even more everyday. I can’t imagine the pain Tina was going through as this took place right before her eye. But she was so full of the Holly Spirit that she almost smiled as she watched, knowing she was doing the right thing. Before Tina past she was able to see her daughter lean on her daddy and see that daddy had taken it on with open arms. Being by her side and she was never mad, at least with others about what hand she was dealt. Privately she shed many silent tears. Tears for what if I die, tears for I’m leaving my 7-year-old daughter without a mom, tears I’m only 38, tears she always said, God is taking me for a reason I only hope I made him proud while I was on earth. I said, “Proud” UN measurable! Heaven was her reward!
 
What would you most like people to know about your loved one?

That once she could breathe after hearing the words you have stage 3 Melanoma. Tina began to help others who had Melanoma and to try and prevent it from happening to anyone she knew or who would read her story on her blog www.paleskinisin.com. She mad a very private illness public. She served as a mentor to many who never met her in person but found refuge in her story and personal notes. Tina was very funny, hard worker, preschool teacher and a wonderful mother and wife. If she was your friend she had your back always. She was a great daughter and the older she got the more caring I saw her become. She spent time with family as often as she could.
What is your greatest source of strength and/or inspiration?

My heavenly father brought me my greatest strength without a doubt. He gave me strength to be my daughters care giver with some days only getting maybe four hours of sleep. To be able to Tina4 housecontinue the next day without being tired. I would never, ever take back the time God allowed me to spend with Tina during the end of her journey. It gave me time to speak with my daughter about things no mother should ever have to. There where many times we laughed together and times we cried together. Time I cheered her that after a month of not being able to get out of bed, we cheered as we watched her take her first steps again. Once she started walking nothing could hold her down. She walked every single day until she went to heaven, that’s how strong she was. Tina gave me more I feel than I gave her during those last few months. She was so strong and full of inspiration and the peace she had those last few days I just can’t explain. I personally feel God leads us before he takes us, which helps those of us left behind. We must be open to God’s gift or you will not receive it.  God was with me when I thought I couldn’t get out of bed after Tina went to heaven. He was with me all those times I cried out in private and my pillow was wet from my tears. I still cry often and miss her tons, but every tear makes me stronger. Tina’s Place is helping me heal and I am looking forward to reaching out to all the families Tina’s Place is able to host.
Tina’s Place was created in Tina’s memory. Tina’s Place will provide a lakefront 2-bedroom cottage getaway, nestled in the trees on an all sports private lake in Michigan for Melanoma stage 3 and 4 patients and their families. There will be no charge for accommodations; food/travel to the retreat is the responsibility of those attending. Visit us at www.facebook.com/tinasplacemi or email us at tinasplacemi@yahoo.com for more information or to apply.

Tina3 house
What is the best advice you can give to someone who thinks that skin cancer can’t happen to them?

I have continued Tina’s passion in Melanoma Awareness and I speak with people about the dangers and some still don’t get that they could be the next one who dies this hour. I explain to them that someone dies of Melanoma every hour of every day. I advise them on sunscreen and reapplying. Wearing hats, sunglasses, clothing with UV protection and No indoor tanning it is just not safe. Tina can not go back words in her life but she would say Never let yourself get a sun burn. Prior to getting pregnant get your skin checked, stories are coming out about woman finding out during their pregnancy that they have Melanoma. Treatment can not be done during pregnancy. Get your skin checked once a year. Most Melanoma can be prevented with regular check ups. Moles can be removed that are suspicious easily if found early right in the doctors office. If you wait you will find yourself in the operating room not only once but several times while fighting for your life. Your beautiful in your natural skin if you can just see yourself as I do. Pale Skin Is In.

Tina2 I wear black

Today is “Don’t Fry Day!” The Friday before Memorial Day is coined “Don’t Fry Day” in hopes that people will take the extra precautions to practice safe sun protection habits. It’s the weekend when many of us will be hitting the beaches, having picnics at the park and just enjoying the outdoors and long holiday weekend. Keep you and your family safe and let the world know you are by taking the “Don’t Fry Day” Pledge!

Here are some great sun protection tips from the Skin Cancer Prevention website:

Do Not Burn.

  • Avoid intentional tanning.
  • Avoid tanning beds.

Ultraviolet light from the sun and tanning beds causes skin cancer and wrinkling.  If you want to look like you’ve been in the sun, consider using a sunless self-tanning product, but continue to use sunscreen with it.

Generously Apply Sunscreen to all exposed skin using a Sun Protection Factor (SPF) of at least 15 that provides broad-spectrum protection from both ultraviolet A (UVA) and ultraviolet B (UVB) rays.  Re-apply every two hours, even on cloudy days, and after swimming or sweating.

Wear Sun Protective Clothing such as a long-sleeved shirt, pants, a wide-brimmed hat and sunglasses, where possible.

Seek Shade when appropriate, remembering that the sun’s rays are the strongest between 10 a.m. and 4 p.m.

Use Extra Caution Near Water, Snow, and Sand as they reflect the damaging rays of the sun which can increase your chance of sunburn.

Get Vitamin D Safely through a healthy diet that includes vitamin supplements.  Don’t seek the sun.

“Don’t Fry Day” also marks the end of National Skin Cancer Awareness Month. You still have until May 31st to place your UV Skinz order to receive a complimentary Special Edition “What’s a Sunburn”  baby skinz swim shirt! Go to the UV Skinz Facebook fan page and share what special child or organization you gifted your baby skinz to!

what's a sunburn_baby

 

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