At 6:00pm I had my husband drop me off to work at a fancy martini bar in the French Quarter. There was a Comedy Show on stage that night, and all the usual locals were in their usual seats drinking their usual drinks. I however, was captivated by the television that hung on the corner of the wall behind the bar. On the screen I saw that a massive storm was headed our way, and gaining strength. The storm was named Katrina. From the looks of it...if it hit anywhere from Galveston, TX to Pensacola, FL we were in trouble.

We were broke but I called my husband and said 'pack the car, we're leaving'. I managed to hustle enough tips throughout the night for gas money, and asked for an advance on my paycheck. At midnight I got home, grabbed my husband, my sister, our cats, a couple changes of clothes and hit the road. That was goodbye to home as we knew it.

Over the next year, we bounced around Texas looking for some sense of direction and stability in the wake of the disaster that uprooted our, and so many others' lives. My husband decided on going back to Cordon Blue Culinary School, in my native Las Vegas town. That was to last 6 months, and we were going to head back to New Orleans and help our community. I went to work in Seattle, WA at Pilchuck Glass School for 2 months to work on my art and clear my head. About my third week into being there, I discovered I was pregnant. We were absolutely elated.

I got back to Las Vegas in August of '06, and we made a plan. We were going to ride out the pregnancy here in Las Vegas, so I could be with my family....and actual hospitals (which they no longer had in New Orleans). When our child was born we were going to wait 4-6 months and head home to New Orleans and help rebuild our city. On February 17, 2007, our baby Ruby Laine took her first breath. She was so beautiful, and healthy and perfect. And myself, even at 37 years old, had never felt such love for another human being. Life was good.

When she was around 2 weeks old I was changing her diaper and noticed a small red 'bubble' slightly protruding from her vagina. Panicked, I called her pediatrician. He explained to me that sometimes babies experience a sudden rush of hormones from the mother and she may have lumps in her breasts (which she did) and it was probably her hymen filling with a little blood and it would go away in a couple of days. I felt a rush of relief....until the next day. I woke up, breast fed her, and went to change her diaper; what was a 'bubble' the night before was now like a vine of grapes protruding from her vagina. I called the doctor back, but being on Medicaid, I couldn't get an appointment until the next week.

I hung up and called my gynecologists assistant Lewellen. Lewellen and I had grown somewhat close in the previous months and she listened. We hung up the phone and after about 5 minutes she called me back and told me to go and meet with Dr Ralph Conti after hours at 8:00pm. She pulled some strings for me. Dr Conti is a wonderful and very knowledgeable doctor. He looked at the mass and told us directly that he had never actually seen this, but had read about it and it looks like Rhabdomyosarcoma. He made a phone call to a colleague, Dr Waldo Feng, and told us to be at Sunrise Hospital at 6am. We were there...anxious, worried, and confused.

Our beautiful, perfect daughter, who never even fussed or cried, was already having surgery at 2 week of age! After about 4 hours and a lifetime it seemed, Dr Feng came to talk with us accompanied by Dr Rashid, an oncologist. He explained she does indeed have Rhabdomyosarcoma a very aggressive soft tissue cancer in her bladder and vagina.

Everything in life I knew up until that moment came to a halt. I got to go see and feed my baby as she was coming out of anesthesia, and she had a tube coming out of her chest. A broviac, which is where all her chemotherapy would be administered, blood drawn etc... I was now not only a mother, but also a nurse, and a wreck. Over the next year, we practically lived in Sunrise Hospital. Chemotherapy was administered every 2 weeks.

Every fever, cough, sneeze, tooth coming in...hospital. She had no immune system. And she was still the perfect baby. Never fussed or cried, and had a huge smile for everyone she met. I was getting second and third opinions from Oncologists around the country, and even the best cancer research centers, M.D. Anderson in Houston, TX. St Jude’s in Memphis, TN flat out refused her, as her case was "too rare". At the close of the year, there were more decisions to be made, as the tumor had not shrunk with the chemo. Nor had it grown.

We took her to Los Angeles to get a biopsy of the tumor. At her size and age, it was a tricky area to get a sample, but Dr Hardy At Childrens Hosrital LA was suggested as the best. Although the tests came back negative, that there no live cancer cells in the sample taken, surgery was suggested to remove a large portion of her bladder, and reroute her uterer to her belly button where she would have to use a catherter to urinate, for life. Matrofinoff is the term, and that was the easier surgery than removing her whole bladder, and giving her a colossimy bag.

Radiation was an option, but at her size and age it would mean having to break her legs, hips, ribs etc every year or so, so that she could grow, and also organ transplants for the rest of her life. I was in the deepest of despair. At this point our marriage had all but deteriorated as well. Ruby's Father could no longer cope with the pressure that comes with Cancer, especially when it involves your own child. He was in denial and was driven into a deep, deep depression. He lost his job and could barely get off the couch. Eventually he packed his car and moved back to New Orleans, where he still lives today.

 I still had some heavy decisions to make. Quantity vs. Quality of life being one of them. I started researching like a mad woman. I did not want to see my child die, but could not bear the thought of her enduring a lifetime of physical and emotional pain. I looked into alternative medicines, and also researched how this particular cancer was treated in Europe, Japan, and India. They all take a 'wait and see' approach as opposed to radical surgery. There was only a 6% curve from American studies, so after long consideration and discussions on the pros vs. cons with her doctors, this was the path I chose.

We took her off all chemotherapy, took the tube out of her chest, and we went home. I feed her organic foods mostly. Especially concentrated greens and fruit that is high in anti-oxidants. I keep her happy and creative. I am honest with her about her condition. She gets MRIs with sedation every 3 months to check the progress of the tumor, and CT and bone scans every 6 months to make sure no new cancers are present. She is now 4 years old and healthy as an ox. 3 years older than first predicted. Her Urologist and I had a deal, if I were to take her off everything, I would let him resect the tumor when she was old enough to handle surgery with minimal damage. A smaller bladder perhaps, but nothing radical except a possible catheter in her urethra. Very discreet, and she would still be able to live a normal life, have kids, etc...

WELL that age has come.

Her last MRI was done in April to determine the next course of action. To EVERYONE'S surprise, the tumor had shrunk by more than 50%. AMEN! So this is where we stand today. it's been a long road, but we have traveled it together. She is due for more scans this month to see if there is anything left, as well as endoscopic surgery (outpatient) so the doctor can get a closer look as to what's going on...and why. I have cut all of her scans and tests back to every 6 months from here on out to avoid any secondary cancers that may be caused by the treatment and the toxins and radiation in the scans themselves. And I now know why whenever I bring her name up to any doctor in the field, they refer to her as 'The Miracle Baby'.

~Patricia Laine~ 5 July, 2011




Andrea Rapanos Patient Services Coordinator Nevada Childhood Cancer Foundation Las Vegas Chapter Director - Flashes of Hope 702-735-8434 – Office // 702-735-8431 – Fax

andrea@nvccf.org