Friends of Megan Fund

Everything that is done in the world is done by hope.

Welcome!

After a long, and courageous two-year battle with Alveolar Rhabdomyosarcomo, Megan became an angel on August 18th

Megan was feeling really good and living normally until the middle of July.  At that point the pain became worse, and at times uncontrollable.  She was hospitalized three times for pain management, the last time for sixteen days.  During the last stay, her doctor noticed tumors on her forehead, and she could feel them in her scalp when she brushed her hair.  She became weaker; the pain became so bad that the pain management team tried a Hail Mary treatment, using a mild anesthetic to try to reset her pain receptors.  It didn’t work, and she was sent home to go on hospice care.  Her doctor told the family that he only sees a child in as much pain as Meg once every 1 – 2 years!!  She was a true fighter.

The pain was horrific, yet until 3 days before she passed, she was primarily happy.  Four days before she passed, all her friends were with her (they were actually with her every single day), and after the home health aide and Maryanne washed her up and washed her hair, her friends and Melissa did her hair and helped her do her make up.

On Saturday, the 17th, Maryanne went in at 6 a.m. to give Meg her meds, which she took.  They told each other they loved each other and both went back to sleep.  When Maryanne went back in around 10 a.m., Meg had lost consciousness.  Hospice came and told the Macaluso’s that Meg was within hours, maybe a day of the end of her life.  With that her friends were at the house within 30 minutes and spent the entire day in and out of her room, leaving when family came to say their good-byes.  They spent the day with Melissa in Maryanne and Mark’s bed, comforting Mel and each other.  Johnnie came quickly and sat on her bed, holding her hand and talking to her all day. 

Saturday night Maryanne and Mark slept on a blow-up on Meg’s floor, pushing her pain pump button every ten minutes, and finally having to give Haldol because Meg became agitated.  On Sunday, Hospice came back, prepared the family that Meg was in her last hours.  She never regained consciousness.  Maryanne and Mark, Mark, Matt, Michael and Melissa spent the entire day in the room.  Megan fought for every breath.  At one point the family started to play all Meg’s favorite music and she seemed to calm down a bit.  In the end, the six people who loved her the most through her entire battle, surrounded her bed, all stroking and comforting her, and finally begging God to take her, and encouraging Meg to let go.  That it was ok to leave.  That they would be ok. With each labored breath, they prayed there wouldn’t be another.  Finally there wasn’t, and the tears began, and they still haven’t stopped.  Her family and friends came immediately, all to say a last good-bye, in the bright pink and green room where they had had so many good times.

On Wednesday, over 2000 people waited up to 2-1/2 hours to pay their respects to the Macaluso’s, and to say good-bye to Megan.  On Thursday, a beautiful Mass of Christian Burial was said by Fr. Michael Kreader at Saint Mary Church.  Meg was carried into and out of church by her brothers, three by blood, two by choice, by the love of her life and two of her best guy friends.  There wasn’t a dry eye in the church.  All of her friends and family were represented in different parts of the Mass, and after recessing to the vestibule of the church, Meg’s favorite song, one that had become the anthem of her life and death played while family and friends placed a flower on her casket and said good-bye.

Life has started to get back to a new normal for Meg’s family and friends.  She is missed every minute of every day by all who knew her.  She was honored by her beloved Sunshine Kids Foundation, at their annual golf outing that was dedicated to Meg’s memory.  They summed her life up perfectly “Beautiful inside and out, Megan taught all of us to laugh often, love life, and cherish every moment”.

The other thing that sums up her life, at least the last two years are the lyrics to that anthem, John Mayer’s Heart Of Life.  When you read them you will see why she, and Melissa, chose this song as Meg’s song:

I hate to see you cry. Laying there in that position. There's things you need to hear . So turn off your tears and listen

Pain throws your heart to the ground. Love turns the whole thing around No, it won't all go the way it should . But I know the heart of life is good

You know it's nothing new.  Bad news never had good timing . But then the circle of your friends will defend the silver lining

Pain throws your heart to the ground. Love turns the whole thing around No, it won't all go the way it should . But I know the heart of life is good

Pain throws your heart to the ground . Love turns the whole thing around. Fear is a friend who's misunderstood.                                           But I know the heart of life is good. I know it's good

To Megan, despite all the horrors she experienced in the last two years of her too-short life, she made the most of all the good times because she knew the heart of life was good.

The Macaluso family is grateful and humbled by the show of support, for two years, by the communities of Saint Mary and Bloomfield and would like to thank everyone who supported them in every way they needed support.