A Parent's Story: Heather Patryas-Valentin (Baby Olivia)

Heather Patryas-Valentin is Olivia’s mom. Olivia was diagnosed with embroynal rhabdomyosarcoma at just six months of age.

 This is their story . . .

 I have two stepchildren - 14 and 12 years old, both boys. We have two Jack Russell dogs. Before Olivia’s diagnosis, we were your average family.

Diagnosis and Treatment...

My husband was changing Olivia's diaper and noticed a egg shaped lump on the right side, above her lady parts. Olivia was two months old at the time.

Were you immediately referred to a specialist?

No, we went to an overnight pediatrician and they referred us to Nemours Hospital because they were thinking it was a hernia and an ovary had popped out of place.

Nemours fixed the hernia the next day, but her ultrasound showed two normally placed ovaries. They thought maybe she had a third ovary.  

A month later after a follow-up ultrasound, they discovered this lump had moved to the left side. The doctors didn’t know what it was. Nemours planned to remove this lump but our insurance wouldn't cover it and we couldn't use Nemours Hospital anymore.

A month later we found another doctor affiliated with Arnold Palmer Hospital. He wanted to watch the lump to see if it grew or shrunk. By this time Olivia was four months old.

We followed the doctor’s suggestion and waited to watch the mystery lump.

 Olivia was now six months old and the time came to see if the lump grew or shrunk. The ultrasound showed that it had tripled in size in just two months.

The doctor decided to operate right away and take the growth out. He assured us this is common and not to worry. It wasn't even 24 hours after we were released from the hospital that the doctor wanted us back at his office to discuss something.

I wasn't thinking it was going to be anything bad, so I took Olivia by myself to that appointment. As soon as the doctor came in he asked where my husband was and I knew something was wrong. He said the tumor they removed was cancerous and it was the size of an orange.

That same day we met with our oncologist and that next week Olivia started chemotherapy. 

She has had three surgeries and just finished chemo this month.

Let’s Get Personal

I want parents to be aware of their babies bodies and how they act. It’s better to be overly cautious than to be too late.  

Being a first time mom, this has been really rough. I knew I was always meant to be a mom. Ask any women through pregnancy what they want and most common answer is a healthy baby. That's all I wanted and then when you find out your baby is sick and has only been in your life for such a short period of time, it crushes you.

I’ve never been sick or broken any bones, and my child is born with cancer. All you think is how you would give anything to trade places with them.

When I first found out all I could do is cry and think, “Oh, my god, people die from cancer. What am I going to do?”

I was like this for probably the first week and finally I had my breaking point. I broke down and had to accept our new life. After seeing Olivia’s smiles after each surgery, I thought, “Why am I crying if she’s not. If she can smile so can I and ever since then we have been going with the flow and smiling everyday.”

We thought about going to counseling. To be honest, my relationship with my husband wasn't doing to good before this happened. We had looked into getting marriage counseling. Since all this started our relationship has gotten so strong we didn't feel the need for it.

When your child is sick nothing else matters and eventually things just worked out and fell into place. We are strong for Olivia and lean on each other now more then ever. I couldn't go through this without him and vice versa.

On Religion . . .

I am a Catholic but do not go to church on a regular basis. I have always believed in God and doing what’s right. After Olivia’s diagnosis, I really began to question everything. I was mad and angry as to why God would do this to me and my family. A family I had always asked for. I never did anything bad in my life. I’m not perfect, but morally I’ve always tried to make the right choices. So I questioned my faith a lot and still do. But that's life.

No one asks for cancer or anything bad to happen. I just figure He is challenging me and I’m up for the challenge. If I love my daughter as much as I say I do, then I will do anything and everything for her and fight this battle with her. I will only come out a stronger person after all this and so will Olivia.

The Future . . .

I worry all the time. Telling me not to worry is like telling me not to breathe. I cant. I stay focused by taking care of Olivia like I would cancer or not. She is hitting all her milestones and I couldn't be happier. We try not to shelter her and just be a normal baby. We go to work and have a routine like anyone else. Except our routine involves hospitals and chemo.

About Olivia . . .

Olivia smiles through everything. When all this started I was so worried she wouldn't be a happy baby. But I don't even think about that now because her laugh and smile remind me everyday that she is happy and is going to be ok. Everyone that meets her instantly falls in love. Even nurses and doctors that aren't with Olivia come by her room cause they hear Princess Olivia is here and they have to see her.

I couldn't have asked for a better baby.

Olivia has completed all of her scheduled treatments. She will have scans in a few weeks and if all is well, her port will be removed.

Today is Olivia's first birthday. Happy Birthday, baby.

To learn more about sarcoma and how you can help, please visit our website.

SURVIVOR INTERVIEW: Rob Ambrose

Rob Ambrose is a 36 year old middle school science teacher.  He lives in Somerville, New Jersey with his beautiful wife Kate and their two cats.  In May of this year, Rob was diagnosed with myxoid liposarcoma. 

This is Rob’s story . . . 

How were you diagnosed?

In February 2014, I injured my lower left leg while training for the NYC half marathon.  I began physical therapy shortly after the injury.  The physical therapist that was seeing me took notice of my extremely tight left hamstring and mentioned that she could feel a lot of knots.  I had been told something similar when I received a massage earlier that winter.  It turned out that my injury was a stress fracture in my left fibula so there was no need for further physical therapy, and there was no follow-up on the tight hamstring.

On May 3, 2014, my wife and I were at Macy's shopping for new jeans.  The first pair of jeans I tried on fit very strangely - they were very tight around my left thigh but not so tight around the right.  I noticed the same thing with other pairs that I tried on.  I became very concerned and my wife, Kate, took a closer look at my thigh when we got home.  We measured my two thighs for comparison and the left one was definitely larger than the right.  Kate also noticed that it looked swollen in comparison to the right leg.  Since it was a Saturday evening and our primary doctor's office was not open, we went to the emergency room at our local hospital.   

The hospital took an x-ray and CAT scan of my leg, which revealed a large mass.  Kate and I were shocked by this - neither of us expected the swelling to be anything serious.  The doctor who came in to see us mentioned that the initial radiology report suspected a possible sarcoma.  I was admitted to the oncology floor of the hospital that evening.  The next day a more in-depth radiology report confirmed the suspicion of sarcoma.  The hospital staff informed me that their facilities were not equipped to provide me with the treatment I would need and referred me to Robert Wood Johnson University Hospital in New Brunswick, New Jersey.  

Kate and my parents brought me to Robert Wood Johnson on May 4th, where I received a series of MRI scans.  The MRI reports revealed similar findings, that the mass was likely a sarcoma.  Since the mass was so large, no biopsy was going to be performed, as it would need to come out regardless of whether or not it was sarcoma.  

It seemed surreal. Time seemed to slow down all of a sudden - seconds felt like agonizingly long hours and I felt like I was in some sort of limbo.  I wanted somebody to immediately tell me exactly what was wrong and exactly how it was going to be solved.  My emotions went through a pretty wide range, but the one I most specifically remember feeling was fear.  I have never been more frightened in my entire life and all I wanted was to be with my wife and to hold her in my arms.  

I remember immediately thinking I didn't want to die and I realized that any hardships or complaints I had about my life up to that point didn't matter any more.

I began reading about sarcoma on the internet during my initial stay in the hospital and quickly found out this was not a good idea.  I was still in the initial shock of being told I had cancer and was not mentally or emotionally ready to take in more information.  During this time, my wife and mother were both extremely helpful and did all of my information-gathering for me.  They helped come up with questions for me to ask the doctors so we could all be more well-informed of the treatment plan.   

What would you tell someone else who is newly diagnosed?

You are going to be amazed with how many people out there love you and are willing to do anything for you.  Don't hesitate to lean on people for help.  

Tell us about your treatment? 

My surgery was on May 22, 2014.  A large tumor measuring 10.6 inches X 5.3 inches X 3.1 inches was removed from my posterior left thigh.  I was actually up and moving much faster than I thought I would - I was only kept in the hospital for one night after they saw I could move relatively well around the floor and even make way up and down stairs.  The main side effect I had from the surgery was accumulation of fluid in the area where the tumor was removed.  It wasn't painful, just very uncomfortable - it felt like a very large water balloon was sloshing around in my thigh and made it feel very numb.  I had a JP Drain to initially remove the fluid but it was taken out after a week.  After that the fluid continued to build up so I had to go in to have my surgeon drain my leg once.  About three months after the surgery, the fluid was completely gone and I felt a lot better.

I started 6 1/2 weeks of radiation treatments on July 2, 2014, and finished on August 18.  I went in five days a week and the sessions lasted about a half hour.  Throughout the course of my treatments I felt increasing fatigue. Near the end of treatments, the skin in the treated area started turning darker and more red than normal. Since the treatments have concluded, the skin has become more irritated and it can quite painful at times – like a very strong sunburn.

I should also mention that since the initial finding in early May and until very recently, my sleep schedule was a wreck and I had only a handful of nights of uninterrupted sleep.

  

How did friends and family react?

Kate let both of our parents and siblings know right away.  She was also very good in notifying my close friends and our school's principal right away.  

I can honestly say that I have had the most amazingly supportive group of friends and family throughout all of this.  Whatever support I have asked for, they have given me that and so much more.  I could not ask or expect them to do better.  It feels amazing to know that I am so loved and that I have so many incredible people in my life.  

Throughout my radiation treatments, I had someone accompany me every single day. My wife, parents, brother, and in-laws all took turns going in with me and were there to greet me with a smile and a hug when I was ready to leave each day. The radiation therapists actually commented on how great it was that I had so many people to support me through this and I completely agree. It made it much easier to go to the hospital every day with someone else.

Do you ever feel alone – even though you have people around you?

Yes.  This is one of the most difficult things for me to explain.  I would say that in some way, shape, or form, this cancer is on my mind all of the time.  It feels like a burden I can't escape or relieve myself from.  That feeling of burden sometime leads to intense sadness and a sense of isolation.  I remember how it felt to know that cancer was inside my body and the fear of it ever returning and having to feel that again is something I could not expect or want others to understand.  

  

Do/did you feel like your life is on hold while you deal with sarcoma?

I try to not let it be on hold, but as I mentioned before, this is on my mind all of the time and in that sense, it has put my emotional and mental state in a deep hole that has been very hard to climb out of.  In that sense even if I am physically trying to experience as much of a "normal" life as I can, many times I am mentally / emotionally in an entirely different place.  I have tried to cope with this by seeing my therapist regularly and not hesitating to talk about my feelings with my wife, who is the best friend and best listener I could ever hope for.  

How has your day-to-day life changed since your diagnosis? What can’t you do that you could before?

I have always been a very physically active person with exercise and fitness and since my diagnosis that has somewhat slowed down.  I did buy a new bicycle, which allows me to engage in a low-impact form of exercise that I could handle.  

What is your prognosis?

I handled the surgery very well and the pathology report revealed a myxoid liposarcoma with no definite round cell component. I was referred to Memorial Sloan Kettering Cancer Center in New York for a second opinion on whether or not chemotherapy would be needed following radiation. On August 5, I went there and met with a sarcoma specialist. I was extremely relieved to hear that chemotherapy would not be needed and I was even more relieved when I was told that my outlook for the future is very good.

There is a very low chance of the cancer spreading and with the radiation treatments the chance of recurrence is also very low.

What keeps you inspired / motivated?

Kate.  She is the love of my life and my best friend.  I aspire to be cancer-free and live a long, fulfilling life together with her.  That motivates me to do whatever is needed to win this fight.

And, finally, a bonus question – what is your hidden talent?

I would like to think it is one I am not even aware of yet.  I try to make myself open to new experiences and am constantly developing new interests and skills.  Over the past few years alone, I have developed a love for studying local history, practicing yoga, and gardening - things that I could never have seen myself enjoying when I was younger.    

As with all of our personal stories, please keep in mind that nothing here is meant to be medical advice. Thank you, Rob, for sharing your story.

Jennifer Redding Discusses Fundraising to Benefit Sarcoma Alliance

Jennifer Redding is one of the Sarcoma Alliance volunteers who helps manage our Facebook Group. She is holding an event in her hometown of Hot Springs, Arkansas, on July 27. Here, Jennifer talks about how sarcoma has affected her life and why she is hosting this event.

Without my daughters, I don't think I could be as strong as some people think I am. I say that because those of us with sarcoma know the feelings of day to day combat. We're in the trenches so to speak. Brittany (28) and Emily (23) are the reasons I fight! I also have Jon, Emily's wonderful husband.

I had a lump on my left thigh but I let it go for 6 long years. Why? Don't laugh but I had bought a stick shift and thought the muscle had built up in that leg. I know, but I am not known for my common sense! I didn't feel so bad when I read that a man thought his muscle had built up because he was working out. When I began having excruciating pain, I went to my family physician, and he at first thought I had cellulitis and gave me a round of antibiotics. When the pain came back, he said that it wasn't cellulitis and sent me off for a CT scan. I was diagnosed in March 2012 with sarcoma in my left thigh. I had surgery on April 15 that same year. Dr. Nicholas, my surgical oncologist, said the tumor was the size of a head! I recovered with two more surgeries on my leg. Then I had mets to my left lung in March of 2013, Surgery took care of those. Now we are watching nodules in my right lung, and I have micro fractures in my left femur due to radiation.

I couldn't find much information on sarcoma. I called the American Cancer Society, but they sent me the same information that I had found on the internet myself! I finally found Sarcoma Alliance and felt so welcome that I have stayed ever since. I was asked to be an admin for the support page, and I remember telling Christine Darling that it would be an honor. I find the support and information invaluable.

I decided I wanted to give back to SA for always being there, and I have met so many wonderful friends and fellow warriors that it just seems the right thing to do. So I have planned a fundraiser. Because we want July to be Sarcoma Awareness Month, I planned the event for July 27, 2014. It is from 12-5 at Fat Jacks Oyster Sports Bar and Grill in Hot Springs, Arkansas. There is a $5 cover charge at the door, and there will be live music, a raffle (prizes including a spa day from one of our famous bath houses and even from a local tattoo parlor!), and plenty of food!

When the movie "The Fault in Our Stars" came out in theaters, it gave me the perfect opportunity to gain awareness so I called our local paper and pitched my story. They were interested, and now I am waiting for the call back for the time of the interview! I have even called local TV networks! My two daughters and I will be hitting the pavement with fliers for Historical Downtown Hot Springs! If you can, y'all come on out!

I recommend starting at least 3 months ahead to plan an event. Sooner if you want to contact businesses such as Disney for prizes. That is something I have learned, and I plan on making this an annual event so I will be starting soon after this one is over. It's hard work but when I think that $500.00 will give someone a second opinion, it's a no-brainer--I'll do it!

 To learn more about how you can host an independent event to benefit Sarcoma Alliance, please visit our website. We are grateful to the many people each year who volunteer their time, talents, and efforts to further our mission of improving the lives of those affected by sarcoma.

FAMILY STORY: Donnie Sills

Cindy & Donnie Sills

Another installment in our ongoing series of interviews with those affected by sarcoma. You can see all articles in the series right here.

The dictionary defines survivor as someone who carries on and we often think of those with the illness as the survivor. Many times, it is also true that the family and friends of those afflicted are survivors. That is how I would describe Donnie Sills: a survivor.

What was Cindy’s sarcoma diagnosis?

Cindy was diagnosed with rhabdomyosarcoma on 23 July 2012 – our 35^th wedding anniversary.

What started out as what appeared to be a sprained ankle 2.5 months prior led to the diagnosis. She had two separate biopsies from two different hospitals.

Did she have surgery, chemotherapy, radiation, something else?

Cindy initially had both chemo and radiation treatments. She ended up having additional radiation following a brain scan that showed lesions. Her counts never climbed to where they needed to be to continue the chemo.

Chapel Hill is about three hours from here and that’s where most of her treatments were. I coined us Road Warriors.

"we had our first kiss - Cindy initiated"

Tell us how you and Cindy met.

It’s a unique story, how Cindy and I met. I am a sole survivor from a family tragedy when was twelve. My grandmother became my guardian. One day, my aunt took me with her to visit her friend. Cindy, also 12 at the time, was the daughter of my aunt’s friend.

They had horses in a barn and Cindy offered to take me up and show me. It became a family joke through the years that she had ulterior motives in taking me to the barn, but we were only 12 – it was innocent.

Through another twist of fate, Cindy came and lived with my family for a year. We were around 14 at that time. There was some flirting and we had our first kiss (Cindy initiated) to the song Sealed with a Kiss. She moved out and we lost track of one another for a few years.

I joined the Marine Corps when I was 18. Once, while I was on leave, my aunt coaxed me into going over to see Cindy. A year later, we were married.

Talk some about your family. Did you tell everyone right away about Cindy’s diagnosis?

We have three children – a son and two daughters. We also have five grandchildren – 3 boys and two girls. One of our daughters had a baby in January – the other had a baby in February.

We told everyone right away. Cindy had already survived a separate major health issue with a ruptured esophagus in 2004. Everyone knew she was a fighter. They were, of course, saddened about the diagnosis, but fed off her strength.

I was pretty much devastated when I started to learn about this terrible disease, but I gained strength from Cindy as well. I knew it was time to fight with her. Fight by raising awareness and funding for research.

What do you want us to know about Cindy?

Cindy never shed a tear for cancer. This became a theme for the interviews and statements given by Cindy to the media.

She was a loving person with not a mean bone in her body. She lived by the saying, “Don’t sweat the small stuff. It’s all small stuff.”

She was a loving wife, mother, and grandmother. She was the rock of our family.

Any funny family stories you care to share?

Cindy could make one heck of a lasagna. Once when my uncle was visiting, she had gone all out and made a delicious batch. He had been here for a couple of days and decided to leave before dinner. Even though he was persistent about leaving, Cindy had a plan: she hid his dentures! He huffed and puffed, but finally gave in and stayed for dinner. He passed away several years ago, but it has become a family legend to tell the story at big dinners.

Throughout her illness, how did your role as a spouse change?

My role changed quite a bit as I started taking on a lot of tasks that she normally did. Cooking, washing clothes, and dishes now became a norm for me. She could no longer work because of the extensive treatments.

At times, my work schedule was jumbled, but I am fortunate to have a flexible employer.

What things stayed the same?

Our love grew stronger through it all. It was tough watching the physical changes, but she always had a positive outlook through it all.

I can’t think of a thing that stayed the same – our whole life was turned upside down.

Do you remember thinking at some point that things would never go back to the way they were?

Cindy had the ability to bounce back many times, so through that and our faith, I always held out hope that things would get back to some sort of normal.

What were you doing to take care of yourself during this time?

I thought I was doing pretty good with that because I am a runner. I couldn’t keep up the schedule I used to have, but I still got out when I could. I also thought I was eating well.

I say, “I thought,” because I actually ended up going to the emergency room and spending a few days in the hospital for prostatitis. I think ultimately it was from worrying too much about things and that’s when I changed my attitude and fed off Cindy’s positive energy to fight back at the cancer however I could.

Did the two of you talk much about the end of Cindy’s life?

I tried several months before she died, but she wasn’t ready to talk about it. She just had all intentions of beating it.

There were a few things that came up in passing – like her telling the kids they need to keep an eye on me if anything happened to her. She was worried about how hard it would be for me.

Tell us about her final days.

Her final days were under home hospice care. When we first got her home, she was able to sleep in our bed, but eventually, we had to have a hospital bed put in the living room area for her safety and access to her.

There was a steady stream of friends and family. I took many private pictures. She was awake and aware pretty much through, but became unable to talk. She would communicate with her own variety of sign language.

A couple of days before she passed, she held up her fists to say she was still fighting. She also signed to me to stop worrying about her.

There was a lot of cuddling. We would take turns climbing into bed with her.

The hospice nurse ordered me to go get rest one morning when I was pretty much stressed-out from lack of sleep and seeing Cindy’s suffering. That’s when we decided to bring in volunteers to help out.

When did Cindy die?

Cindy died at 2:35 pm on September 6^th.

This part, I have only told a few people: she had been suffering bad for the previous 18 hours or so. With every breath she took, there was a sound of pain. My oldest daughter (Amanda) and a friend were with us at the time. We are of faith, but my faith was really being tested.

I told my daughter that I was going away for a minutes. I went out to our sunroom and let out a big yell and had it out with the man up above. When I was done, a calm came over me.

I walked back inside, held Cindy’s hand, and a calm came over her. Her breathing became slow and relaxed. She appeared pain-free and had a peaceful look on her face.

Cindy opened her eyes – something she hadn’t done for a few days. She lovingly looked at our daughter and me. I told Amanda that Cindy was getting ready to go – and then she did.

"I still feel her presence around and it's a good feeling."

How are you doing today?

Today, I’m doing fine. I still feel her presence around and it’s a good feeling. The first month was extremely hard. I would walk into our quiet house and be stricken with sadness and loneliness. Now, when I walk in, I get a tingling sensation and it is comforting. I would like to think of it as her spirit hugging me.

I took a trip to Daytona for Biketoberfest. It was a change of pace that I definitely needed. Riding is a great hobby of mine and it’s also a way to raise awareness.

After I came back, I started in on remodeling our house while still keeping Cindy’s essence around. I purchased a painting from Landon Cooper, founder of Miles 2 Give, and its place is in the room where Cindy passed on. The painting was done in bright rainbow colors in the spirit of Cindy.

Rainbows have a special meaning for us because right after she was diagnosed with RMS, a brilliant rainbow appeared in front of our home. I called it Cindy’s Rainbow and it became a symbol of hope for us. Another rainbow formed there moments after she passed on.

I’ve gotten back into running more and always look for a good charitable race to run in. It’s something I like to do and it’s a way I can pay it forward.

I haven’t really found a new normal yet. I think after I get the house remodeled, I may get into some type of normal. I definitely want to spend more time with my grandkids. That is a high priority for me. They have a way of taking all your cares away.

"I intend to be happy."

What do you want for your future?

I want to continue with Cindy’s legacy of raising awareness. I really want to get heavily involved with that. I want to be around to witness a cure and I want to say that I was a small part in that happening.

I intend to be happy. Cindy would want me to be happy. I plan on living life to its fullest, as I know too darn well that there is no promise of tomorrow.

If you would give one piece of advice to other men who are caring for their very ill spouses, what would it be?

To stick by your wedding vows and take them to heart – in sickness and in health, until death do you part. Never give up on each other.

Cindy never gave up on anything in life. She is my hero.

As with all of our personal stories, please keep in mind that this is Donnie's story. Nothing here is meant to be medical advice and the ideas expressed here are not necessarily those of Sarcoma Alliance - though we wholeheartedly encourage second opinions with well-qualified specialists.