Lily Story

LILY'S STORY

was born in the winter of 2004 in New York City. The pregnancy and birth were perfect. Lily was a wonderful baby and life was great. She was a happy, healthy child and started nursery school in September 2006. Fast-forward to December 23, 2006, 3 weeks before Lily’s third birthday… 4 a.m. Lily: “Mommy, my forehead hurts, give me medicine.” We are surprised, as Lily NEVER wants medicine. We gave her a little Children’s Tylenol and in one hour she began to vomit. We notice her legs starting to shake. We think she has a stomach virus. Something about her legs shaking starts to scare us. It is now 5 a.m. on a holiday weekend; no doctor’s around, so we call 911. We are taken to the Beth Israel Medical Center E.R. by ambulance where Lily is examined and the doctor would like to do a CAT scan to rule out anything neurological. At first we balked, thinking it was a little drastic for a stomach virus, but we said O.K., do it. About one hour later the doctor returned with tears in her eyes.

Lily

Doctor: ”I have some bad news.”
Us: “What?”
Doctor: “I see a mass.”
Us: “What?”
Doctor: “I see a mass.”
Olivia (mom): ”What are you trying to tell us?”
Doctor: “I think Lily has a brain tumor”.

BAM!!!!!!!!!!! Our world is rocked. Destroyed.

All hell breaks loose. Doctors start rushing in, putting IV’s in Lily’s hands, social workers running in to see how we’re doing. Lily is astonishingly just sitting there on a gurney, wondering what’s going on, seemingly unaffected by all the commotion. We have entered an alternate universe. Numb. Everything is happening in warp speed. We are then informed that they cannot help Lily there; we will have to go somewhere else. We arrange to be brought by ambulance to NYU Medical Center. Lily is given an MRI and it is confirmed, she indeed has a brain tumor and acute hydrocephalus, which is the build up of fluid in the brain caused when a tumor blocks the normal flow of the cerebrospinal fluid (CSF). Emergency surgery takes place on December 24, 2006 to create a drain to relieve the pressure and allow the natural flow of CSF to return. As Lily was being wheeled into the O.R. the surgeon put his arm on my shoulder and said, ”You will have the same Lily when we come out of there as you have now, I promise.” At that moment, we had no idea what he was talking about. The procedure, called a Third Ventriculostomy, is a success, performed by pediatric neurosurgeon Dr. David Harter. He also took a small biopsy at the same time, which was incredible as this eliminated an entire surgery just for a biopsy. The first words out of Lily’s mouth when she woke up after surgery were “I want Rice Krispies”. Everybody is thrilled as that was the last thing Lily said going into surgery. We still weren’t even aware of what could have happened to Lily during the surgery.

On December 25, 2006 about 12 hours after Lily’s brain surgery, we hear HO…HO…HO…Merry Christmas and in walks Santa…Lily jumps into his lap and says “Santa Claus, I’ve been waiting for you ALL night. I saw you flying around outside my window.” We are stunned, it’s almost like nothing even happened! We were also told that had we not gone to the E.R. when we did, that in another 4 to 6 days, it would have been a “life threatening situation,” in which Lily would have collapsed somewhere, wherever we happened to be, and probably would not have survived.
Upon leaving the hospital, we were told, “By the way, NYU does not take your insurance, nor does the surgeon, nor does the anesthesiologist, etc., etc., etc. We came home on December 27, 2006. The first piece of mail we opened in the stack that had accumulated was a bill for $50,000.00, the second was a bill for $38,000.00 and so on. We were reeling at this point. We thought our Lily was going to die, and we were bankrupt. What were we going to do? We had no idea. It became a full time job, mostly for Olivia, trying to get the insurance to pay, trying to manage all the bills that were arriving, trying to control what was happening so quickly and so harshly, and mostly, trying to take care of our daughter and make everything seem “normal” for her. We waited two excruciating weeks for a diagnosis. During those two weeks, we spent most of our time looking up pediatric brain tumors on the internet. We found nothing to help us. It was all very dire. Somewhere in early January 2007, our appointment day came.

We three arrived at The Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders, which is part of NYU in New York City. Upon entering the Children’s Center for the very first time, we were horrified at what we saw. Children, dozens of children from infants to teens hooked up to “poles” with pumps and tubes running into them. It was so horrifying that in order to process what we were seeing and experiencing for the very first time, I had to go outside and catch my breath for 10 minutes before being able to go back in there. We sat down with Lily’s doctor; Dr. Jeffrey C. Allen and he spoke for about 15 minutes. He told us the diagnosis: Lily has a very large mass called a Diffuse Mixed Glioma (Astrocytoma/Oligodendroglioma) on the Thalamus infiltrating toward the Midbrain WHO (World Health Organization) Grade II. He told us that because of the location and infiltrating nature of the tumor Lily has, it couldn’t be surgically removed without “destroying her”. Radiation, which would also have severe consequences, especially because Lily was so young, was not an option at this time. We were then told Lily would need chemotherapy. At that moment, we again experienced our world explode.

We found out this “gold standard” treatment is more than 30 years old, made for adults, and not even for brain tumors, actually. We asked why? There is no funding for research we were told. We learned that brain tumor research for children received almost none of the children’s cancer research funding. We learned that most of the pediatric brain tumor research funding went to high-grade tumors (grades 3 and 4). The children with low-grade tumors (grades 1 and 2) were left with nothing. We were stunned. When Dr. Allen said, “We know very little about Lily’s tumor” he really meant it. Once I said to the Dr. “I can’t believe what is happening here, how this is the best we’ve got for these children.” He responded, ”It’s barbaric, what we do these children is barbaric, but it’s all we’ve got…” We learned that brain tumors are now the number one killer by disease of children in this country. We learned that the government actually cut funding for pediatric cancer research over the past decade, especially since the year 2003. We learned, and learned and learned, and continue to learn.

Lily “tolerated” her treatments very, very well. Through endless rounds of chemo, blood draws, anesthesia, MRI’s, E.R. visits when her immune system was almost non-existent, hair falling out, vomiting, etc. she remained a happy, loving, never complaining, innocent child who loves what all little kids love. After fifteen months of chemo, Lily became allergic to one of the drugs, Carboplatin. We were told about half of the children on this drug may develop an allergy to it at some point. The allergy is basically anaphylaxis. Once Lily started becoming allergic, she was immediately taken off and her treatment ended. That was in March 2008. Lily’s Dr. said,” If we were ever to give Lily Carboplatin again, it would be with tremendous fear…” Lily will never get that drug again. Dr. Allen then said, “Hopefully we’ve helped Lily, and not harmed her.” It was decided that from that day forward we would monitor the tumor with an MRI every three months. We were told that whatever we chose to do going forward was up to us. Olivia, Lily and I walked out onto the street that day. When we arrived home, we felt just as the Dr. said we probably would. The feeling is that of being set adrift in the ocean, just the three of us, alone and floating around, out in the middle of nowhere, on our own. What were we to do? Our only child has a giant tumor in the middle of her brain, and we, her parents are left to take care of her. We are not doctors, what are we going to do? So we then embarked on another path towards healing Lily, and ourselves for that matter. We have been on a path which has brought us to some incredible people; healers and we will share that with you. We have been treating Lily using many different modalities which include Reiki, Homeopathy, Vibrational Waters, Nutritional Supplements, Prayer, Meditation, Shamans, Positive Visualization, etc. It’s all out there. Lily has been “off treatment” since March 2008. The tumor has not changed since the day we found it. Lily is in perfect health, aside from the tumor. At her last MRI, another one of Lily’s doctors, Dr. Matthias Karajannis said, after checking Lily out, ”Whatever it is you guys are doing with Lily, keep it up…”

Many have asked, “Can people live with this in their heads for a long time?” All we can say right now is that Lily IS living with this in her head, and not only living, but THRIVING!!!!

What is happening? Olivia is in a heap and in my effort to comfort her, with my arms around her I say, “Everything will be o.k. , everything will be o.k.…” the Dr. looked at me and responded, very sternly,“No dad, it’s not O.K ….” I knew at that very moment we were in big, big trouble. We knew now that this was about as serious a situation as we could ever be in. He then spoke for another 45 minutes, of which we heard nothing. We were then handed a very thick folder explaining the protocol (plan) that Lily would be on, and were told to go home, read it, share it with family and friends, and sign each page saying we understood what we were consenting to. The good and the bad. The side affects alone of each drug were about 10 pages each. Lily went back into surgery for the placement of a medi-port inside her upper chest, which is a device in which the chemo is given through and blood is taken from, to avoid constant needles. The first one did not work and we all ended up in the hospital for 7 days, where Lily developed an infection, and the poor nurses were forced to try and “manipulate” the port by pushing on it and trying to move it around and pretty much torturing Lily until we put a stop to it and demanded a new one. This was our first experience advocating for our child. A parent must learn very quickly when thrown into the deep end of this medical pool. Finally, Lily was brought into surgery again to replace her medi-port. A nightmare beginning to say the least. So on January 19, 2007 Lily started an 18-month protocol of chemotherapy consisting of 3 drugs Carboplatin, Vincristine and Temozolomide. It was a pilot study. They were studying the effects, good and bad, of adding the newest drug, Temozolomide,(Temodar) to the cocktail of Carboplatin and Vincristine. Most children with cancer are treated in studies. This study was being conducted through the Children’s Oncology Group (COG). We were told it may, or may not work. The type of tumor Lily has, and I quote her Dr. “generally does not just go away, they just don’t. So, what we are trying to do is turn it off, whatever is making it grow, we’re trying to turn off”. We entered a place where there are not many answers to any questions you may have, we were stunned by how little is known. We were told that Lily’s protocol is considered the “gold standard” treatment being offered today.

It is the goal of The Lily Fund to help all of the Lilys out there. We will share what we have learned with you. We will collaborate with all of the other incredible people and groups trying to save our children by raising funds for research to find a cure, developing less toxic treatments, wherever it may come from, making sure that these children have the best quality of life they can possibly have.