My Story: For Keegan
This month’s My Story features an incredible mother, Paula, who lost her child much too early to melanoma. Keegan was just 24 years old when she earned her angel wings, and her mother has been dedicated to raising awareness ever since.
Here is Paula & Keegan’s Story.
How did your daughter discover she had Melanoma?
Keegan Alyse Knappert was first diagnosed at 21 and died after two and a half year battle at 24. Keegan was an extreme cheerleader with a short crop top uniform that was very stiff. She had spot under her arm that wasn’t’ really even “mole” looking or I would have paid more attention to it. After a 3 day competition in Florida where there were several performances and top on/top off…the spot began to bleed. A few weeks after that she noticed the scab would not go away and often it started to bleed. In January of 2012 when she told me about it I said…”Well if it’s bothering you go to the Dr. and have it looked at.” Personally I thought she was being a bit of a hypochondriac. The doctor said that it was going to be easy to remove, and so it was. About a week after that, she went to get her stitches removed and got the word that it was stage 3 melanoma. Most people hear melanoma and think, “Oh it’s just skin cancer!” I wish I knew then what I know now…
What was the primary treatment facility involved in her care? What did her treatments consist of?
Melanoma starts on the skin, but has the potential to become metastatic or travel to other places in the body. We were hoping that was not the case for Keegan, as she had to undergo surgery the following month to clear the margins and make sure it didn’t spread anywhere else. The doctors removed some of her lymph nodes as well in case the melanoma had spread, but everything was clear! This was great news as Keegan began her junior year at San Diego State University.
A year of clean scans and MRI’s went by and the first week of Keegan’s senior year at SDSU she felt a sharp pain in her armpit area. She distinctly remembers looking to her classmate next to her and explaining that she could barely write because of the pain. She knew something was up immediately. She knows her body well (thank God!). She called her Oncologist and he was able to see her that day. He suggested a biopsy right away, and the biopsy proved that the melanoma had in fact spread to her lymph nodes. She had to take academic leave from school to get another surgery and discuss treatment options since it had recurred. There is never a “right” time for cancer, but being that it was her senior year of SDSU it really had interrupted a crucial period in her life.
After another surgery, Keegan was approached with the opportunity to be in a clinical trial at UCLA medical center. There she began her treatment of Interferon to kick this melanoma for good! December of 2013, she began her 12 month program at UCLA medical center. She stayed with her cousins up in LA and received infusions of interferon Monday-Friday for a month straight. After that she was to do 11 months of self-injections, which she absolutely dreaded every single day. The interferon made her extremely sick. Basically all of the side effects of the drug, she experienced. Depression, mood changes, massive hair loss, rashes, horrible flu like symptoms, extreme exhaustion, insomnia at night, and anxiety. Not to mention it’s not fun to poke yourself with a needle every day. Since she was in a clinical trial and this was her second attempt at battling melanoma, she was continuously getting MRI’s, CT scans, PET scans, etc. to make sure it wasn’t spreading anywhere else. The interferon managed to keep her cancer free for about 9 months after that.
What would you say has been the most impactful experience from Keegan’s diagnosis?
By far the most impactful experience is that people are now paying attention. Keegan was a very social outgoing girl with hundreds of Facebook and social media friends. When they followed Keegan’s journey…we got word from SO many people that made appointments to get their skin checked. She became an advocate for sun protection, specifically for little kids. It made her cringe and angry when we saw kids in strollers that we knew had little or no sunscreen on.
The other impact was that there is a whole world out there of people suffering from this black beast. We are all scrambling and searching for answers, treatments, a cure…desperately. One treatment doesn’t work for all. Keegan joined many melanoma support groups online and her circle of friends grew in numbers. She was being treated, sick as a dog…but still reaching out to comfort others that were in the same shoes with the same ugly disease.
Her melanoma friends (“Mela Homies”) are now my support group in my grieving process. We all understand each other. We share daily with each other…crying…,getting angry, and celebrating victories of NED (No Evidence of Disease) which every “Mela Homie” longs for. It has been a beautiful transition. I lost a daughter but gained a family…No one fights or grieves alone.
What organizations have been the most helpful?
- Skin Cancer Skinks
- UV Skinz
- The Sun Shield
- Facebook groups
- Melanoma Research Foundation
- MRF of New England
- And my personal favorite website for great youth info: The Claire Marie Foundation
What has been your biggest challenge and your greatest source of strength?
The biggest challenge for me as a mother is I miss the fight. I miss her entire being. Her smile, her voice and her simply walking in the door everyday saying “HI GUYS!!”…I miss the alone time with Keegan in the car trying to figure out how we are going to beat this so others don’t have to suffer and go through the awful treatments.
The greatest source of strength is my car “Faith” which we had wrapped in Keegan’s memory with all sorts of Melanoma information I know that I am carrying on her wish to educate people, primarily about pediatric melanoma. She is on the hood of my car in her cheer uniform, and Keegan goes everywhere I go. Every day I have people looking at my car in the parking lots of work, shopping centers, and grocery stores as well as on the freeways and side roads. I share information on this BLACK BEAST every single day. It is amazing to me how so many people know so little about Melanoma, but I was one of those people just 3 years ago. I love sharing with people and I feel like the photos of all the kids that have lost their lives to this disease have not lost the battle in vain. Those of us who are healthy are left here on earth to carry out the message.
What inspired you to create “Faith” and take this step in awareness? What sort of reactions do you receive from people?
The inspiration of Faith my MELA MOBILE came into fruition shortly after Keegan passed. My warrior friend Kristi Donoahue has the first in the fleet, “Hope”. Keegan loved her car and the faces of the children on that car made Keegan fight even harder. My decision in creating Faith was to take Kristi’s idea and change the information into children’s info. For example, one fact I added: Pediatric melanoma can show in other signs than a mole. It can look like a rash or a bug bite.
I also added as many faces of children fighting this battle so when people stop to talk to me about the car, I am able to explain that melanoma is not just an old person’s disease. So many say: “Kids get melanoma?” I am so blessed to have Keegan driving with me every day looking down on me saying you are doing a great job mom. I’m proud of you for being brave. Her last words to me were “BE BRAVE MAMA!”
The overall reactions are that of amazement. I can’t go to the store without expecting to have a conversation with on onlooker when I return. I love it.
Tell us about Keegan’s Kids.
Keegan’s Kids Foundation for Pediatric Melanoma was formed in memorandum of Keegan’s biggest wish when she was alive: “SAVE THE LITTLE GUYS”. It made her so sad to see first-hand children as young as 6 months that were battling the same disease she was. She made friends with many of them and even had conversations via Snapchat and Facebook to keep their spirits high. Keegan since the time she was diagnosed was upset that people thought it was only “skin cancer”. If that was the case, then why do these babies that have never been exposed to the sun have it?
Keegan’s Kids first toy drive Christmas 2015: We rallied together with all of Keegan’s Mela Homies and gathered over 650 toys to take to cancer kids. We were able to hand deliver toys to warriors fighting the disease with children. This was by far the biggest gift I got for Christmas…In giving…I was able to heal.
www.Keeganskids.org is a nonprofit. Spring is in the air and we are full steam ahead in trying to get sunscreen machines in place at city parks, the baby beach, and beach trail, Keegan’s three favorite places. This will allow parents to protect their children in case they forgot their sunscreen at home. We need funding as each machine costs money. We are working with city councils to have the machines maintained along the route by city workers weekly. Keegan’s Kids logo will be placed on each unit so the parents can reach out and get information on Pediatric Melanoma.
What would you most like people to know about Keegan?
“Keegan” (which means Little Fiery one) has had the “it” factor since the day she was born. Throughout her life she was kind, but she was spicy. Keegan embodied goodness. She was tenacious and never gave up on her fight or helping others around her. She was unpretentious and kind. She was honest, sometimes charmingly blunt…must have been the “Ginger” in her. She was positive and persevering. She was a WARRIOR and a real HERO.
Is there an inspirational quote, song, or book that gives you strength that you would like to share with our readers?
Inspirational quote: “Be brave mama this is not an end…this is a beginning".
Inspirational song: Oceans by Hillsong UNITED…
You call me out upon the waters
the great unknown where feet may fail
and there I find you in the mystery
in oceans deep my faith will stand.
I will call upon Your Name
and keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine.
And a great book on overcoming grief: Journey of the Souls by Michael Newton, Ph.D.
What advice would you give someone who thinks skin cancer won’t happen to them or a member of their family?
I would tell them…neither did I. What I know now…is it does not discriminate skin color, age, or race.