Gabrielle's Garden with information on childhood cancer opsoclonus mycolonus neuroblastoma brett michaele gabrielle sara joshua hanna


Hello, my name is Gabrielle Eden and I am eleven years old, welcome to my garden. I have a lot of fun here in my garden, please join me in a game of hide and seek. I enjoy playing games, talking and writing. It is peaceful here in the garden so I come here to read a book or write but most of all I come here to be myself. I know that here in my garden I am safe. There are no mean words in my garden. There is only compassion and understanding for others.

My first year of life is all that I had knowing a carefree childhood then at the age of 14 months my life changed forever. I was diagnosed with neuroblastoma, a very aggressive and deadly form of childhood cancer. I was also diagnosed with an extremely rare disease called opsoclonus myoclonus syndrome that was caused by the cancer.

My parents were told that the only hope for my future would be that maybe one day I would walk again. Over the next six years I spent most of my days at Children's Hospital for treatments, doctor's offices for checkup's and physical, occupational and speech therapies.

You see when I got sick I lost all of my abilities. I was no longer able to sit, stand, walk, speak or do anything. I consider myself lucky though because I survived and far surpassed the doctor's expectations.

My whole life I have had to struggle with the effects of these diseases. I was never able to be around other children and just play for fear of getting sick or hurt. You see this disease robbed me of my childhood and today at the age of 11, life is still a struggle.

This year just after my 11th birthday I will celebrate 2 years treatment free. Today my biggest challenge is going to school and being a kid without others being mean to me or making fun of me. I wake up ever day not knowing if this is the day I could have a relapse and need another treatment. But the day comes and goes another day treatment free, I am thankful.

School work is a struggle as well but I stick to it and give it my best, I never let my school work bring me down. Some days I get angry and wonder why I had to get sick but then I quickly remember how lucky I am to be alive, to spend time with my family, to play with my friends, even to do a D.A.R.E report.

Many people call be stupid but they do not really know me. I have to work three times as hard at learning but I succeed, I do not give up, it is not in my nature. I know better than to start drinking or smoking. I would not do drugs because I know how precious life is. My life has been far from easy and may never be but I will not use this as an excuse to do drugs. I am a strong person, I have to be.

I am in Fifth Grade this year, and my teacher is Mr. Stelle. I like him, he is very nice. I also go to Mr. Tash for Social Studies, he is nice too! I also go to resource center for part of the day to get extra help with my math and reading. I have more difficulty with these subjects because of when I got sick. I have struggled year after year but continue to make progress in these areas. This year I made Silver Honor Roll at school. My mom is very proud of me and I am also proud of myself.

Well that's all I can think of but I am sure my mom will tell you more about me.

Gabrielle is a special girl in more ways than one. She has overcome adversity and has taken on every challenge that faces her with all her might. She is strong willed, determined and bright. She is always there to pick up your spirits when you are down and has a way of saying just the right thing to make things better. She is gifted in her abilities to reach out and touch other people and make a difference in their lives like no one else can.

Gabrielle is truly a strong girl. She has experienced more in her short life than most people do in their lifetime. Gabrielle was born on May 17, 1995 at 5:17 P.M. she was a perfect little baby, happy and healthy, what more could a mother ask for. Well her world, and ours was shattered on July 1, 1996 when Gabrielle began showing signs of an illness. To start we thought it was just a little bug and it would pass. WRONG! Over the next two weeks she continued to vomit whenever she would eat. She started to fall and began to crawl again (she had just started walking independently the month before). I thought maybe it was because she was week but my gut knew better. Within a three-day period she was unable to walk, crawl, sit or stand. It took all she had just to hold up her own head. Her eyes began to bounce and dart all over the place and she would scream unless she was held upright over someone's shoulder. And that was how she was for the new several months.

On July 25,1996 she was admitted to Children's Hospital of Los Angeles with the anticipation of finding a brain tumor. I am thankful that was not the case; she did however have a tumor. She had Neuroblastoma; this is a very aggressive form of childhood cancer. The prognosis for this form of cancer depends on many factors. The first, being diagnosed as close to or before age 1. Gabrielle's tumor was found early because she presented with the neurological problems. The diagnosis for this condition is Opsoclonus Myoclonus (OMS) and I will tell you more about that later. The second is the stage, Gabrielle was stage II as it was not only on her adrenal gland but attached to a few lymph nodes. The third is histology and if there is n-myc amplification. Gabrielle's tumor had favorable histology and no n-myc amplification, which means a non-aggressive tumor and chemotherapy was not necessary. However, if she did not suffer from Opsoclonus Myoclonus she would have been on a chemo-therapy protocol. The reason for this is children that have Neuroblastoma with Opsoclonus Myoclonus have a very small chance of the tumor being aggressive or reoccurring. Therefore, the risk of the chemo does not outweigh the benefit. However, some children have a better prognosis from the Opsoclonus Myoclonus if they receive chemo.

On July 29, 1996 she underwent surgery to remove the tumor. She tolerated the surgery well but post-op recovery was when we almost lost our little girl. We were sitting in her hospital room and daddy was holding her in the required position, over the shoulder, and she stopped breathing. I will never forget the feeling of watching my baby turn blue as they tried to resuscitate her. This is when my angel got her life wings. The minutes that it took to bring her back seemed to me an eternity. I have never felt fear like that before and never hope to again. The feeling of helplessness however has continued. The not being able to fix your child and make their world right for them is a hard burden to carry. I am so glad that Gabrielle does not appear to be burdened by her problems. She is such a great kid I cannot even tell you.

After dealing with the diagnosis and the surgery we now face the neurological condition, Opsoclonus Myoclonus (OMS). Little did we know that this condition would deal her a life long hand of uncertainties. You see there was not much known about this disease when Gabrielle was diagnosed, she was only the 13th case in 15 years that they had seen. There has not been much progress made in understanding or treating this disease since Gabrielle became ill.

The most widely accepted theory is that this condition is an autoimmune disorder. The theory is the body's immune system is trying to destroy the tumor however the tumor and the brain must have similar properties, as the immune system cannot tell them apart and the brain is an innocent bystander caught in the "cross-fire" between the immune system and the tumor, which it is trying to destroy.

Gabrielle's condition did not improve much after surgery so we began treatment for the Opsoclonus Myoclonus. One week after surgery we started her on IVIG (intravenous immunoglobulin) to help control her symptoms of OMS. The theory behind this treatment is that these antibodies attach to the antibody's her body produced that caused the damage. OK, whatever as long as it helps. Thankfully in Gabrielle's case it did, slowly, but it helped. She continued on a slow course of improvement until she caught several colds that sent her back to square one. You see whenever her immune system is called upon out comes the evil antibody that was helpful in fighting the tumor but now just reeks havoc on her body. Only at this point did we break down and but her on prednisone (steroids). We started her on a very high dose of daily steroids and weaned her down to every other day over the course of a month. The prednisone did bring about quicker progress in her stability but this too was short lived when another cold caught up to her and finally landed her in the hospital for another week with the lose of all her abilities again. So over the next three years she continued on IVIG and prednisone with many attempts to wean from both.

The IVIG treatments have varied from once a week to once every eight months. Her last treatment span was from November 25, 2002 until May 27th 2004 and to date has not require another one. This is the longest she had ever gone without a treatment so far. We scheduled treatments on an as needed basis. Symptoms of the Opsoclonus Myoclonus reoccur slowly over time until you realize, hey where is the child I know. Gabrielle's symptoms are listed here "Symptoms". It is just amazing the difference in her before and after a treatment. Within hours of starting the infusion her symptoms slowly resolve. The most immediate resolution is in her speech.

I hold my breath and cross my fingers; she has been weaned off of the steroids as of the end of August 1999. I sometimes wonder if she would function better if she were still taking this medication but then I come to my senses and realize what little benefit she may see from prednisone would not outweigh the long term risk associated with long term steroid use.

Currently she wears glasses due to Accommodative Esotropia, (crossed eye). To my surprise she is also farsighted and needed glasses for that. The neuro-opthomologist assured my that this would have happened regardless of the OMS and is in no way related. After viewing old video's Gabrielle's eye always crossed but I just thought it was part of the Opsoclonus.

Gabrielle has been attending our neighborhood school and is now in her third year there and has made amazing progress, she is in Fifth Grade. She is in a fully inclusive classroom with a curriculum that has been modified to her learning abilities. Gabrielle can complete most of the regular curriculm work with help in reading. Her math skills are lagging but have become much better. She is working on her keyboard skills as writing is still taking a lot of time. But I am thankful that she can write since her visual processing is so severely effected that they are amazed that she even learned to write at all. Gabrielle functions very independently in life however, her reading disabilities hinder her in all areas of school work. She goes to resource center for Math and Language Arts as these areas have been severely impacted by this disease.

Now my not so little baby is all grown up into a beautiful young lady. She continues to make improvement and has come such a long way. I expect each year she will blossom even more. She is pushing for her independance so it is time for me to let go and watch her fly.

Over the last few years I am much more aware of her learning disabilities and how far behind same aged peers she is. Some of her learning disabilities are due to the motor control and processing information issues but in time my heart tells me that she will be fine. For the most part with help in reading Gabrielle understands work that her peer are doing. I read a book about sensory Integration Dysfunction and it was like reading a book written about Gabrielle. This information gave me a much better appreciation for how strong Gabrielle has been to overcome her disabilities.

Over the past ten years she has gone from saying two words to talking in complete sentences and not knowing when to stop talking. Her articulation needs improvement but it is coming along nicely. She has just now reached the point where you can understand her on the phone. I find myself impressed with small things like her reading a sign, pouring a bowl of cereal with milk and yes even getting dressed. Simple tasks that we all take for granted are daily challenges to overcome for Gabrielle. The best part of the story is the day she was first able to say "I LOVE YOU MOM", I will never forget the day, August 4, 1997.

Hold onto your dreams and never let them die. Hold your children even tighter and never let them forget how precious they truly are. Most of all cherish all they are. We are all different but we all have a heart.

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