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.