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Jessica Rose Foundation, Inc. in her Mother’s words:

Jessica Rose

On December 16, 2006, two weeks before her fourth birthday, my daughter, Jessica Rose, was diagnosed with a rare pediatric cancer called neuroblastoma stage IV – a cancer of the nerve cells and most often not diagnosed until stage IV .  There are about 650 new cases a year.  To learn more about neuroblastoma, please visit www.nbhope.org.  To learn more about how you can help children improve their chances of survival against neuroblastoma, please visit www.bandofparents.org.

Jessica’s first round of chemotherapy started the day after Christmas, 2006.  She underwent three cycles of high-dose chemo (one cycle per month) to shrink the mass in her abdomen.  Our community in the Tampa Bay area was extremely supportive, emotionally and financially.   I couldn’t have asked for better friends to stand by us or better “strangers” who came into our lives and became new friends!  In addition, our friends and family on Long Island, where we are originally from, are a huge part of our lives – sharing Jessica’s story and creating more awareness for neuroblastoma and holding fundraisers to help with medical and care expenses.  We have met some incredibly caring people throughout our two year journey.

In February, 2007,  Jessica and I flew to NYC for a 12-hour surgery at Memorial Sloan Kettering Cancer Center to remove the cancer in her abdomen.  It was wrapped around both adrenal glands and her aorta.  It was a very successful surgery resulting in a complete resection of the mass!  MSKCC has a world-renowned team of clinical doctors and surgeons dedicated to treating children with neuroblastoma.

On January 27, 2009, Jessica went for a routine maintenance treatment at the outpatient facility.  She was in a very good mood that morning.  The night before we celebrated my birthday and Jessica blew out the candles on my cake as she did on everyone’s birthday cake!  While I was getting ready for work that morning, she was chatting up a storm with me and being all silly and giggling.  She showed me which baby doll she decided to bring with her for a checkup that day.  It was “Jamie” – her favorite doll!  I don’t know where she came up with the name.  I asked her several times but she never really explained.  Jessica kissed me “goodbye” and off she went with Grandma and Pop-pop for her appointment with “Jamie” and her baby doll stroller.  They arrived at the clinic around 9am.  Around 11 o’clock that morning, a sequence of events began due to a transfusion complication and by the afternoon, she was on life support at a local hospital, then flown to another hospital that evening.

Twenty-four hours later, I was told her heart was giving out and she needed additional life support – a heart and lung bypass machine.  It was too weak to pump the blood through her body and she was unable to maintain a detectable pulse.  Bypass gave her heart the rest it needed and forty-eight hours later, her heart improved significantly.  She was getting stronger again, as I knew she would!    Her pulse was strong and steady!  I played music for her with her Barbie CD player and I hung lots of pictures of her in the cardiac ICU so the doctors and nurses would know the little girl underneath all the wires and tubes.  She was so swollen that she was unrecognizable.  I didn’t let her brothers or my parents see her like this.  I brought “Jamie” to the hospital and tucked her under Jessie’s left arm because the bypass lines were in the right side of her neck, an area we needed to stay away from.

On the morning of February 5^th Jessica had a stroke.  I was told the internal bleeding to her brain caused so much damage that it was irreversible – that everything above the brain stem had been affected.  I don’t think a parent can ever be prepared to let their child go.  After everything Jessica had been through, it surely felt as though life was playing a very cruel  joke on us.  I thought to myself – “Being well on her way to a complete recovery after battling cancer for two years and now this!  She touched way too many lives not to continue with hers! She gave so much to others and now to be taken away so suddenly, unexpectedly and tragically was too much to bear!”

That night, we had a choice to make and we took her off the heart bypass machine but kept her on the respirator.  I was not ready to say “good-bye”.  The doctor told me that there was a chance her heart would give out during the night without the support of the bypass machine.  Everything over the past six years that made Jessie’s spirit Jessie was gone from the little body I was holding.  I spent the night lying in her bed snuggled up close on the right side of her-the same way we slept every night at home ever since she was diagnosed.  I held her right hand and “Jamie” was lying on the other side of her.  I kept my right hand on her heart all night in case it stopped.  I watched her face hoping for some miracle.   The night was too quiet and uneventful other than the deep pain and sadness we all felt.

On the morning of February 6^th, Jessica was removed from the respirator and placed in my arms as I sat on a couch near her bed.  I held her for the last time and said “goodbye” to the dream I held in my heart even before she was placed in my arms for the first time on December 31^st, 2002.    Jessica Rose is “forever” six years old.

At the closing of her celebration of life ceremony on February 12th, 2009, my three teenage sons, Robert, Michael and Nicholas, released live butterflies.  Jessica and butterflies – beautiful, gentle, yet strong and free to soar where there are no limits.   For weeks after her services, I spent many hours every day in the garden planting new flowers because everything died from the unusually cold weather we had in January.  The frost killed everything colorful and most everything else looked dismal too.   Jessica loved helping me plant flowers and when I wasn’t looking, she would sometimes pick a flower. Of course, it was always the prettiest one including a rose now and then.  She would bring the flower to me saying “Hurry, Mommy, we need to put it in water before it dies”.   On the day Jessica passed, when I left the hospital for the last time, I remember noticing the sun’s warmth for the first time in weeks.  When I arrived home early afternoon, my son, Robert, was planting lots of flowers.  He planted until the sun went down.  I think it was his way of dealing with his sorrow.  The new flowers brought color and life back to the garden that day but it took months for the rose bushes to recover.  Finally, a new rose began to bloom.  I noticed it one Sunday morning through a window in the kitchen.  I grabbed my camera and took pictures of it.  It was perfect and it was Mother’s Day.   Jessica gave me yet another gift and she purposely waited for Mother’s Day to give it to me so there would be no doubt in my mind and in my heart that the rose was from her.

Jessica was one of the strongest people I ever met.  She faced every day with the courage that most people wished they had.  She taught me patience.  She gave me wisdom to share and strength to go on, especially when I thought I had none left.  She inspired me to be a better person.  She taught me what it means to have hope.  I didn’t know what hope was before our journey began.   ”Hope shines brightest when the hour is darkest” – (J. Maxwell). No one should ever have to travel this dark journey but life as we know it isn’t fair.  Jessica is a perfect soul and is now a beacon to help light the way of others.  She lives on in the hearts of all who knew her and her legacy lives on.  She will continue to touch many lives through the work of the foundation.  I believe from one person’s determination and perseverance, a difference can be made and, therefore, many dreams are possible.

Jessica is still very much a part of my life and my dream.  The Jessica Rose Foundation, Inc. was established in September, 2009.   We are headquartered in the Tampa Bay, FL, area.   Our board and committee members are committed to its success.  We will assist families in the Greater Tampa Bay area and in the states of NY and CO once fundraising activities within those states are underway.  If anyone is interested in helping with the foundation’s program, feel free to contact me at maureen.massari@yahoo.com.

I honor Jessica’s life in many ways.  I cherish all the memories she gave me, especially the gift of unconditional love.  I treasure the friendships that get me through the darkest moments.  I’m committed to sharing Jessica’s legacy of hope and inspiration and I found a way I can make a difference in my daughter’s name.

Maureen Massari

The Jessica Rose Foundation, Inc. was established in September, 2009, by her mother, Maureen Massari.  Please visit the link for information regarding a  fundraising event February 6, 2010. Jessica is the youngest of Maureen’s four children. Jessica’s teenage brothers are Robert, Michael and Nicholas Gallo. Jessica’s strength, determination, courage, wisdom, compassion and zest for life inspired many for over two years. Maureen believed that engaging others and keeping them engaged was critical to making a difference.  She thought Jessica could easily have been someone else’s child and until there is a cure, the next child diagnosed could very well be that of someone who was following their journey.  Maureen spent a lot of time promoting other children’s charities in hopes of creating awareness for them and compelling others to donate to their cause.  The foundation has five Board members who are very committed to its success because of their love for Jessica, their desire to help other children and families…but most importantly, their determination to make a difference. Maureen shared Jessica’s story with the world in hopes of making a difference in others’ lives.  It very much made a difference in theirs!  She is determined to continue sharing Jessica’s “life” and her legacy.  We are ALL committed to making a difference no matter how small when it’s needed most!

When a child is diagnosed with cancer, the whole family is diagnosed!