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.

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