Cienna's Prosthetic eye

While I was out running yesterday I began thinking about Cienna, specifically her prosthetic eye. I have many regrets when it comes to both Cienna and F, but many I've been able to work through.  But this one regret still nags at me all these years later... the prosthetic eye.

Cienna had her right eye removed before she was a month old.  She had to wait six to eight weeks before she could get a prosthesis.  Where her eye should be just looked pink.  She had this spacer in place.  It's purpose to put pressure on the orbit to promote bone growth.  The eye's growth is what causes the orbit to grow.  Then when she was completely healed she was to get a prosthetic eye.

I think the specialist is called an ocularists.  I should Google that to confirm, but I'd just like to finish this.  There was a local one in our area.  I think they worked primarily with adults.  Cienna was referred to them.  Coincidently, R's grandmother had a prosthetic eye.  She raved about their work.  However, when it came to Cienna they did a generic fit and the eye was always somewhat flat looking. It lacked the depth of other prosthetics.

Cienna would constantly rub her eye.  It created mucous and it would get irritated.  It teared a lot. She'd rub it and it would pop out.  I remember clearly the little suction plunger used to put it back in.  I can remember her saying "uh oh" when it either turned or popped out.  Even after it was resized to help promote bone growth,  it still wouldn't be quite right.

The year she became very ill.  I finally asked her doctor to refer us to their ocularist.  I wanted her to be molded and custom fitted.  The ocularist came while she was under anesthesia and molded her socket.  This helped him create a custom fit for the eye.  I'll never forget going to the appointment to have her final fitting.  The ocularist showed her the new eye.  Cienna was taken with it's beauty.  She remarked on it immediately.  If memory serves me well... she called it her "new pretty eye."  He removed the old eye and put in the new eye.  The fit was amazing.  Cienna could not believe how it felt.  The old eye became "the yucky old eye." The new eye perfectly matched her real eye and you could not tell the difference, or at least other people couldn't.

The old yucky eye, flat and lifeless.  It's just
as I remembered it to be.

How my heart broke that I didn't pursue that custom fit for her. She received this eye in October she would die the following February.  I still have that "old yucky eye" put away with some of her belongings.  To this day I still regret not doing this for her.  She never had mucous again.  She didn't rub it any longer.  It didn't tear excessively.  The mold made all the difference. The lessons we must learn in life are not always easy.

I'll have to find some old pictures of Cienna and post them... when I have the emotional strength.  It's very taxing on me emotionally to take that trip down memory lane.

My Baby was Born with Cancer

It's come to that point where it's time to talk about Cienna, my first daughter.  The little sweet girl who came into our lives at just the right time to give our lives some new perspective.  I can remember being quite focused on F and all of his issues, baggage, complications... call it whatever you like he wasn't a normal healthy baby and I was in constant crisis mode with him.  Then this sweet baby girl came into our lives and we were introduced to a couple of things.  The first, what it was like to have a baby that had normal motor function.  The second, babies can be born with cancer.  Yes, born with cancer.

Cienna was born on January 18, 1995.  I remember the morning very well.  R had a doctor's appointment prior to the scheduled Cesarean.  As soon as we were done we walked over to the hospital and checked in for her scheduled delivery. I can't remember if R's mom was caring for F or if we'd made arrangements for hm to stay at the Rotary House (a local respite facility for special needs children or children with health needs). Cienna had a normal Cesarean delivery.  She weighed 8 pounds 5 ounces.  She was so beautiful.

We took her home and everything seemed to be going well.  We adjusted to our new family.  My mother-in-law stayed to help me with F because I was unable to lift him.  I can remember this day as if it was yesterday.  My mother-in-law says to me "I noticed Cienan's eye has a funny look to it in certain light." Then she showed me what she saw.  In just the right light you could see the light bounce off the inside of Cienna's eye and shimmer in a weird pink reflective way. It was almost like when a cat or dog's eyes reflects light, except a different color.

Monday morning I call the pediatricians office.  I made an appointment for the following day.  The next day is Valentines Day.  R and I take her to the pediatrician and I show her exactly what my mother-in-law saw.  Cienna's red reflex was normal, but the eye had that reflective glow.  Our pediatrician says to us it could be a congenital detached retina or this "one really rare thing called retinoblastoma, but it's so rare a pediatrician may never ever see a case of it in their entire career."  We leave the appointment knowing we will be referred to a pediatric opthamologist who we already knew because she was F's doctor.

I can remember going to dinner and a movie with R that night.  I don't remember what we saw or even if we talked about what happened at the pediatrician's office that morning.  I just remember neither of us could or would be prepared to deal with what was to come.

The phone rang at about 9 am.  It was the ophthalmologist's office.  They were calling to find out how soon we could get Cienna into the office.  You'd think that I'd have really thought about this call and what it meant, the urgency of it. I was naive and had no clue.  R and I arrive at the appointment and we wait and wait.  They are literally squeezing us in.  The doctor comes in does her initial evaluation and then she needs to dilate Cienna's eyes so we wait some more.  Eventually, we've been there long enough that R needs to leave for work.  Finally, the time comes when the doctor comes in for the detailed exam of Cienna's eyes. They put these little metal things on her eyelids to force them to stay open and it was HORRIBLE.  Cienna was crying and crying.  It was very unpleasant.  After my new baby girl is done being tortured, the doctor looks right at me and says "She has retinoblastoma in both eyes.  The right eye's tumor is very large.  I'm going to immediately send you to Children's for an MRI. I will refer you to UCSF or Children's Hospital Los Angeles." What?  My head is spinning.  I'm not really sure I'm grasping the situation at this moment.

I call R and his mom.  R leaves work early or his mom comes to get us.  I can't really remember.  We head to the local children's hospital for the MRI.  We run into my favorite doctor, Dr. Hutch.  F's neurologist.  He is shocked to see us.  We explain what's happening. His look should have told me a lot, but again CLUELESS! The ophthalmologist calls us on the hospital phone to give us the results.  Cienna's right eye is 98 percent tumor and needs to be removed IMMEDIATELY!  We are told she will call us later in the evening to tell us which hospital we are going to be referred to.  Our heads are spinning!

The phone finally rings.  We are told that arrangements have been made with the Dr. in Los Angeles.  We need to leave the next morning.  It's Thursday.  The surgery is scheduled for Friday.  We are in shock.

We get up and leave the house as early as possible.  We arrive with the MRI films and we are waiting in the eye clinic.  The doctor comes in and tells us the procedure to remove the eye is very simple.  All aspects are covered and the recovery process.  Then he proceeds to tell us that she will be referred to hematology oncology and they will put together her treatment plan for her CHEMOTHERAPY.  R and I look right at each other.

The room is spinning.  "What?  Chemotherapy You say?"

Doctor "Yes, chemotherapy that is how we treat retinoblastoma in conjunction with laser therapy..." more things are said, but at that moment.  My head is spinning and my heart is broken into a million pieces once again.

Me "You mean this is cancer."

Doctor, "Yes, retinoblastoma is a rare children's cancer that affects the eyes.  She has the bilateral version..." then he goes into the blah, blahs about the genetic aspect of the disease.

I don't think we were really listening anymore because we were just told that our daughter had been BORN with cancer.  Cancer grew in that right eye all through her in-utero development.

**Their Newsletter just arrived in my inbox. If I can figure out how to imbed or attach it I will.  For now here is the link:

Retinoblastoma International

Introduction

It starts with the title. I've been given a lot of lemons. There are times when I feel a whole truck load has been dropped off at my house. I've had to make a lot of lemonade. I feel like I am constantly making the best of things.  Porcupine because advocating for my son has resulted in me becoming outright prickly to get things accomplished. Professionals talk a good talk. If I am not careful I can head down a path that I don't want to be on. It can be distracting from my goal. It becomes a matter of focus.

I'm in my early 40's. I have two children.  I have had three.  I've been married to my husband for 25 years.  Although my husband and I have stayed married our relationship, for many, many reasons has been up and down and very rocky.  At times, I'll admit almost at complete meltdown almost beyond repair.  We've lived apart for periods of time throughout our relationship, but have managed many times to pull it together.  We have had more than our fair share of heartbreak, heartache, and tragedy together and it hasn't always made us stronger... but we are working on it.  

In 1993, our first child was born healthy and suffered an illness shortly after birth.  This illness forever changed the course of our lives.  Our son F, had encephalitis as a newborn resulting in severe brain damage and disabilities. In 1995, our second child, Cienna, was born healthy and shortly after her birth, three weeks to be exact, she was diagnosed with bilateral retinoblastoma.  A rare children's cancer of the eye.  She would only live to the age of three years and eighteen days.   

Losing Cienna to cancer was and still is my greatest tragedy.  I think I can speak for my son and husband and say it was for them as well.  Cienna was our joy.  She helped put F's disabilities into perspective.  Losing her caused all three of us to lose a part of ourselves.  It would be a long time before we stopped just going through the motions of life. 

Then after two years of grief, we stepped back into living again.  It began on February 22, 2000, when our daughter, C, was born.  From the very first day she came into our lives she was a ball of energy, vibrant, and full of life... and HEALTHY! LIfe has been a whirlwind journey ever since.