Our 2007 Think Pink for Life Honoree

Congratulations to Kellie May!
Our 2007 Think Pink for Life Honoree

When Kellie called and told me about her being honored at The Evening in Pink, she told me that she felt guilty. Guilty? That’s my most humble and self-sacrificing friend, Kellie, for you. I told her that she was just as deserving as any other person that submitted her story. She said, “Brenda, have you read some of those stories that have been submitted? Some of those ladies….” I interrupted her to say “Kellie, YOU also have a story.” ---Brenda Hurlburt

Kellie’s Story written by her friend Brenda…

“Boy did she ever downplay her situation! You have a lot of gaps to fill. It’s a good thing the judges could read between the lines,” said a mutual friend after I sent her the link to read Kellie’s story that she submitted to foreverybody.com.

I was asked to give my perspective of Kellie’s story so that others reading it would have a deeper understanding of what this amazing person has gone through.

Kellie and I met 12 years ago while teaching middle school together. We both decided to start our families at the same time. My son was born and still Kellie wasn’t pregnant. My son turned one and still Kellie wasn’t pregnant. She watched sisters-in-law and friends get pregnant and have their babies while still trying for her own. The day she finally went to see a fertility specialist she discovered she was pregnant. Yeah!

Sadly, the challenges of getting pregnant carried over into the birth. Six weeks before her due date, Kellie was drying off after showering for work. She felt her umbilical cord. She rushed to the hospital with her husband where the doctors performed an emergency c-section and the baby was rushed to Primary Children’s Hospital.

Porter spent his first three weeks of life at Primary’s before coming home with a feeding tube through his nose and no answers as to what the future would look like for this little boy. This is what the immediate future looked like for his parents: speech therapy, occupational therapy, physical therapy, early intervention visits, CT scans and all day visits at Primary Children’s where he would see many different doctors and specialists. It took over two years for someone to finally tell Kellie that his diagnosis was Cerebral Palsy.

Even though Porter is walking and riding a bike when we weren’t sure that he ever would, the challenges, doctor’s visits, and therapy appointments continue. How do you get teachers, students, and others to see through the physical disability and instead see the loving, intelligent, funny seven-year-old? How do you convince this same seven- year-old that he is not stupid or dumb and that he is the same as the other kids, but has to overcome some challenges? What do you say to your little boy that asks you “Mom, when does Cerebral Palsy go away?”

These are all challenges Kellie faces.

Once Porter turned three, Kellie was ready to add to their family. Unfortunately, history repeated itself and Kellie was struggling to get pregnant again. She watched as family members and friends got pregnant and had their babies all around her. This time she consulted the fertility specialist after not succeeding on her own. She took fertility drugs for awhile and then tried artificial insemination.
Their second and final try (Kellie was physically, emotionally, and financially done trying) was successful. Yeah!

Kellie waited to announce her pregnancy until she got through the first trimester. Shortly after that I got a call during Christmas break asking if I could watch Porter. The doctor’s office had called and wanted Kellie and Clint to come in and talk about the results of the pre-natal testing. They were told that there was a small chance that their baby would be born with Down’s Syndrome.

Kellie was scheduled to have ultrasounds through the rest of her pregnancy. After each ultrasound there was no conclusive evidence that would tell them if the baby did in fact have Down’s. The only way to be 100% sure was to have an amniocentesis. They agreed that they would keep the baby regardless of the results. After years of trying to get pregnant, they were not willing to endure the risks involved in performing an amnio.

Kellie went into labor five weeks early. When I got to the hospital the doctor was there telling Kellie that yes, the baby did have signs of having Down ’s Syndrome. For the second time, her baby was taken from her and sent to Primary Children’s Hospital for tests to confirm. The worrying was now over whether or not the baby had Down’s, but the real worrying and challenges were to begin. The severity of Down ’s Syndrome can vary widely from child to child.

Besides having a mental disability, Down ’s Syndrome children can have heart defects, leukemia, chronic ear infections, gastro-intestinal problems, growth problems, early mortality, thyroid problems, obesity, eye and ear trouble among
other things. Where would Parker fall on this scale?

In his 17 months of life, Parker has had five echo-cardiograms, three this year alone. For each full echo, Kellie watched her baby go under anesthesia and then held her breath until they told her he doesn’t need heart surgery.

The main challenge with him right now is getting him to gain weight. Down ’s Syndrome children do tend to be smaller, but Parker would sometimes lose weight that he could not afford to lose between doctor’s appointments. At one point last spring she was taking him in weekly to get weighed to make sure he was gaining. Each ounce was critical to keeping Kellie sane and from keeping the words “Failure to Thrive” from everybody’s mind. He is making progress, but not fast enough for his mom to be able to take him in for a check-up and leave with no new concerns to watch for until the next appointment.

At this point of the story Kellie is facing her biggest challenge yet. This time it is not one of her children, but herself.
She has been diagnosed with breast cancer after finding a lump during a self exam. Even though the doctor and radiologist thought it was nothing, probably just a cyst, most of the time they are benign….it was cancer. Kellie’s terrible luck continued when she underwent eight aggressive chemotherapy treatments, instead of the more common four treatment plan.

Before she even started the chemo treatments, she had three surgeries in six weeks, the baby had ear tubes put in, and her husband, Clint, had emergency dental work done. By mid-April of this year their family of four had been to the doctor thirty times and she didn’t start chemotherapy until May. The chemo treatments were every two weeks, with a follow-up appointment on the in -between week. There is a co-pay for every chemo treatment; there is a co-pay for every follow up visit; there is a co-pay for each surgery, and then there is the 20% of all of these bills that the insurance doesn’t cover, left for her family to pay.

While she endured the physical challenges and pain that chemo brought, the emotional challenge was extremely tough. Even though Kellie has an incredible outlook, a never ending positive attitude, and an upbeat perspective, the loss of control over her life eventually took its toll on her, sinking her into bit of a depression.

Her type A personality needs control, organization, a plan, and predictability. All of these things were no longer an option with cancer. She had to rely on others now and this was difficult for such an independent woman.

She had the whole first chemotherapy treatment written out in a journal so that when round two came she would know exactly what to expect, but it didn’t work that way. As if all of the side effects of chemotherapy weren’t enough Kellie had to give up who she was to this stupid disease, which was just an extra burden for her to go through.

When Kellie called and told me about her being honored at The Evening in Pink, she told me that she felt guilty. Guilty? That’s my most humble and self-sacrificing friend, Kellie, for you. I told her that she was just as deserving as any other person that submitted her story. She said, “Brenda, have you read some of those stories that have been submitted? Some of those ladies….” I interrupted her to say “Kellie, YOU also have a story.”

Kellie’s Story from her perspective...

I found a lump in my left breast during a self-exam last January. My doctor sent me for a mammogram, and because the mammogram wasn't conclusive, I also had an ultrasound. The radiologist reported the lump to be a cyst. I received a letter reporting that everything seemed normal, but advised further follow-up. Both my doctor and the surgeon felt it was just a cyst. Because of the size, I opted for a surgical biopsy to make sure. I had the biopsy on a Friday and on Monday I found out that I had cancer.

At the end of March, two days before my 35th birthday, I had a mastectomy on my left breast. I had no known risk factors. Thanks to the support of my family, especially my husband and mom, neighbors, friends, and co-workers, I recovered quickly and returned to work two weeks later. I needed to get back to my classroom (I was a preschool special education teacher) and tie up loose ends before taking the rest of the school year off to start chemo treatments.

While waiting to start chemo, the troops were rallied. Car pooling was planned for my school aged son, and his teachers at school were notified. My infant son's care was also carefully coordinated until the time my mom would essentially move in and take care of him and our home.

My cancer was diagnosed as Stage II, Grade 3, Hormone positive and Her2Neu negative. My oncologist informed me that I had the garden variety breast cancer, which is what you want when it comes to medicine, garden variety. He said that he would be surprised at a recurrence and his prognosis was cure. What a relief, not totally, but a relief none the less. Recurrance is not an option for me. I have two young sons who need me, though I need them too. I need them to keep me living.

My seven-year-old was born premature due to my cord prolapsing. He was life-lighted to Primary Children's where he lived for the first three weeks of his life. He is diagnosed with mild cerebral palsy and has made major physical gains over the years. My 15-month-old was also born premature, and also spent time at Primary’s, just a week though. He has Downs Syndrome, but is without many of the health conditions that affect these kids. He does have some minor heart complications that are being monitored by the cardiology department at Primary’s.

I'm writing this on the eve of my last chemo treatment. Tomorrow I will be having my eighth and final treatment. Though it's been a long summer and I have lost my left breast, my hair, lots of sleep, my appetite, my sense of taste, gained a higher sense of smell, endured many different side effects including depression and insomnia, not to mention general aches and pains, I have shed more tears of joy than of sorrow. I have an amazing support group, and I attribute that mostly to the love everyone has for my special boys. My husband is amazing, my mom is an angel, I am so fortunate.

I will be returning to work Monday when the new school year starts in a new position as a 7th grade health teacher. It will be my 13th year as an educator. My son will start 2nd grade; he's so excited. My mom will be hanging around for a few more weeks while I transition back into life. I will hopefully be having a consultation on reconstructive surgery within the next couple of months. I would like to get all of the medical procedures behind me. So, that's my story. For more of my story you can go to my "blog" at http://www.blogger.com/www.caringbridge.org then visit me by typing in Kellie May.

Murray, UT