One Day…..One Year……it’s all the same!

 

June 3, 2011

Dear Melina,

I can’t believe an entire year has passed that I have not shared one day with you. Your giggle has been absent from my ears, your smile has not brightened my eyes; your nose has not nuzzled my neck as you cuddled close.  I cannot get use to you not being attached to my arm.  To not feel your cool fingers wrap around me as we walk. Everyday…everywhere we went we walked arm in arm. I miss that!

There are days I ache to talk to you. I miss all of conversations so much. I’m always wondering what you would think about the directions are lives have taken.  What you would say to each decision we have made since you left us.

The need to see you and hear your voice gets stronger the more time passes.  A little voice whispers in my head reminding me of all our family video tapes.  I know you remember those.  We spent entire days camped out on the couch watching them.  Sometimes just you and I and other times the crew would gather.   As the day would unfold and your brothers, sister, cousins, aunts and uncles would drift in and out of the house the living room would fill up.  As soon as they say we were having a family video day they would grab a blanket and a spot in the living room and burrow in for the day.  Dinner never got cooked those day.  We always turned them into a pizza and chicken wing day.  We just couldn’t get enough of them.

I haven’t had the courage to watch a home movie since you last slept in this house.  I want to…I ache to  but am afraid to.  I have found a routine in which I can function with your absence.  If I watch a video and see you, hear you then I’m afraid the ache I try to bury deep inside will rise to the top and overflow taking what control I have…control I guard very closely.  I’m afraid I will not be able to function.  I can’t do that to daddy, to Sam, Nick or Angie.  I know the day will come when I can no longer take not seeing you and pop a tape in the machine.  You know my motto.  Worry about it when it happens. So when it’s time to press ‘play’ I’ll worry.

There are so many things I want to say to you. So many conversations we missed out on.  I hardly know where to begin.  I began a journal that I call ‘Letters to Melina’ that I have been writing in since our last day together.  There has been some space in between many letters.  Sometimes I talk to you out loud and don’t feel like repeating myself on paper.  For a while I have been in a writing fog but that seems to be getting better.

I feel like I need to tell you some of my regrets.  Yes I have regrets. I second guess the choices we made throughout you cancer journey and I envision different paths we could have taken.  Many have told me that I shouldn’t do that. That I have to have faith that we did all we could to save you.  They’re right….but when you are a parent who has lost a child you always have regrets, you always second guess yourself.  At the end of the day I do realize that we did all we could and that the outcome of different choices could of brought worse results instead of better.  My thoughts certainly drift down these paths from time to time but fortunately I have been able to drift right out of them.  Thinking of the warrior you were has helped me continually do that. Even though 13 years was not enough time I am thankful to have had each one of them with you. 

I think the biggest regret that haunts me is not realizing that at some point you would stop talking.  The first few days after we brought you home for the last time there was much to organize.  At times I left you in the hands of your grandmother, uncles, Aunts, brothers or sister to take a break and walk outside for a bit. 

I did not know you would go silent so quickly.  One minute you were yelling for a new movie or green popsicles and the next you were silent forever.

I regret not staying by your side 24/7.  I regret not holding your hand every minute, nuzzling your cheek with my kisses and whispering all that you mean to me in your ear. I wish I could have that time back to listen to your thoughts, wishes and dreams one more time.  I regret all the conversations we missed. I just wasn’t prepared for you to go silent so quickly. I feel like I blinked my eyes and you drifted away. I could not catch you. I could not bring you back.. I’m so sorry Lovely

Since you moved to Heaven Melina living through each day has been like drifting through an early morning fog high on a mountain top. One moment the haze so thick visibility is impossible. The next moment recognizable shapes appear. Luckily all of my foggy days cleared enough for me to see life relentlessly holding on to me….not letting me drift into invisibility.  

It is not easy to navigate this new life. You give me strength. I know you are with me. Sometimes I can feel your presents.  I know you are trying to help me. Please don’t worry about me. Don’t worry about the tears you see on my face or the sadness you see in my eyes.  You always fought…….so I will always fight!

I need you to understand My Lovely; my tears are not for you they are mine.  Mine to shed. They are the only way I can let the ache out and not let it swallow me up.  I do not cry because I worry for you.  Since you took Jesus’ hand I knew where you were and who you were with. I know you are safe and for that I am grateful.

Melina I cry for me because I miss you. I cry for the sorrow I see every day in Daddy’s eyes, for the longing I see on Sam & Nick’s face when they are looking for you. For the ache I see in Angelina each time she is watching her cousins bond with their sisters knowing she no longer has you to do that with.  That breaks my heart.

So you see Melina….my tears are for my sorrow.  Maybe one day they will not fall so often but for now I will just let them be. You don’t know how many times I wish I could change the hands of time and have you back.  But I would never want to take you from the paradise you live in now and bring you back to a life of suffering and illness. The fact that you no longer suffer is the only small scrap of peace I can find.

So one day…one year….it is all the same!  Life now is a game.  A game of balance.  Balancing the sorrow and the new life that was forced upon us.  A life without you. I know you don’t want us to cry any more.  I know you want me to stop hanging on to ALL your things but I am not ready.  Maybe one day…but no promises.

Every time I hear your name or see your picture I burst with pride. You were such a wonderful kid Melina. It was my pleasure, my honor, my delight to be your mother.

If I were told at the beginning. That I would only have you for 13 years.  That the last six of those years would be in an all-consuming cancer battle.  With all the stress, hardships, let downs and fear I would not hesitate to do it all over again just so I could be with you.  I hope you knew that you, your brothers and sister have been and are the greatest gifts of mine and Daddy’s lives.

I love you,

I Miss you desperately,

Mama 

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Neuroblastoma Walk 2011

Hello Friends,

Plans for Neuroblastoma walk 2011 are well underway. We have all the Clarence Schools involved in promoting the walk.  Many of Melina’s school friends are already busy making things and helping to organize a wonderful day in Melina’s Honor.

Sometime mid week Registration forms should be out and our New Web Site with online registration should be up and ready to take your registration.  there will also be a link for any walker to start his or her own or family fundraising page through a site called Outdoors for a Cause.  All the info you need will be on the new web page.

If you are a potential sponors visiting our site for the first time we are have it a little snag with the new web page that will have all the Walk and registration information.  all should be resovled by the end of the weekend.  To look up our history….Melina’s Cancer journey and the beginning of our fundraising efforts please visit:

www.caringbridge.org/visit/missmelina

If anyone is interested in volunteering to help with the walk or would like to make a basket for our Theme Basket Auction please email me at MelinasWhiteLight@yahoo.com we can use all the help we can get!!!!!

On a heart breaking note…………..So many time I have asked you all to pray for a awesome young man named Nick Franca.  Last weekend Nick lost his fight with Neuroblastoma.  When one of our NB children leaves  us all of our hearts break.  For me it was very emotional. Nick’s mom and i have talked many times while our kids were in treatment. knowing exactly what her heart is feeling as Nick fought the last week of his life and the days that followed his passing just brings me to tears. Please pray for Nicks entire family for peace, strength and what else……. will help I still am not sure. god Bless Nick and the Franca family.

God Bless Lisa

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Still Here……….

So Sorry for the lack of updates.  Cure Me I’m Irish went awesome.  UB was beautiful and everything went so smooth.  We had no hiccups throughout the night.  Our attendence was down compared to last year but we kind of expected that with having to hold our event on St. Patty’s and St. Joseph’s weekend.  We still raised enough money to send 26,500 off to the NB Alliance for Neuroblastoma research.  We call that a huge success also considering everyone at the event seemed to enjoy themselves and did not leave till the end.  Getting pictures up was a little difficult but I was finally able to get them on facebook at Melinas white Light (under groups) if anyone is interested in checking them out.

 http://www.facebook.com/#!/media/set/fbx/?set=a.214613175215857.65115.100000015287825

a lot has been going on in the Nb world and in ours.  My sister Wendy had her bone flap relplaced this month after having a portion of it  removed when she had her brain bleeds last July in Cali.  Everything went great and she is already on the upward swing side of recovering.  Which is really nice after the tough year she has had. 

Melina’s White Light is officially incorporated with the state of NY and soon will be partnered with the NB alliance to complete its 501 (c) (3) not-for-profit status with the IRS.  Basically MWL will be up and running as a fully functioning foundation…..Finally!

Other good news is that Dr. Sholler has accepted a postion at the Van Andel Research Institute in Grand Rapids Michigan.  This means more research for NB kids…new less toxic trials for NB kids…..and a much shorter time span from when a trial is ready to be in a clinic and when it actually is open for kids to benefit from. We are all very excited to be apart of this transition and the research that Dr. Sholler and her collaborators from the nmtrc are working on.  More info on Dr. Shollers move can be found in the link below (that is if I did it right …and it works). 

 http://www.nbglobe.com/2011/04/03/dr-giselle-sholler-accepts-new-position-at-van-andel-research-institute/

On the fundraising front we are fast at work putting together our next event. Neuroblastoma Walk 2011!  I hesitated a little bit about starting another fundraiser so soon but many people continue to ask if we are doing the Walk this year.  If you remember we had our first Walk planned for last year but my sister had two brain bleeds and changed all our plans.   I really felt we needed to hold this Walk while school was still in session so we decided Saturday June 18th would be a good day.  June will sadly mark one year without my baby Melina.  Not exactly something we choose to celebrate but certainly something that we want to recognize with positivity and Hope for the future….For all of us.

Later this week will be holding our first meeting for the Walk so if anyone is interested in being on the committe and helping us plan this event you are MORE than welcome to.  Just email me and I’ll give you all the particulars  MelinasWhiteLight@yahoo.com.  Remember this is the first time we are organizing a Walk so any advice, expertise, places to hit for sponsorship…anything…..we are happy to hear them and we are in need of help.

On the home front…..Nick is recovering from his 2nd surgery this winter.  He had a pilnitol cysts near his belly button.  At his first post op check up they found 3 more that were near his back side.  Today we went for another check up and had all the stitches removed from the area.  Not fun for him but the healing should really move forward more quickly now that the stichers are gone.   He missed quite a bit of school the last three months but some how managed to make the honor roll with a 90.5.  

Angelina is turning 13 this wednesday.  Talk about an emotional birthdate.  For me and her……  The last birthday party we celebrated with Melina was her 13th and i know that fact has not escaped my Angie. The milestone  will definitely be celebrated for Ang but the touch of sadness is never far behind for any of us. Angelina also brought home a report card that was impressive with a 89 average and rave reviews from each teacher.  And for my Sammy he is almost finished with his first year of college.  It has been laced with a lot of ups and downs but he stuck it out and has everything set for next years classes at Clarkson.  I can’t find the words to express to you all how much I cant wait for him to be home. 

For Joe and I ….well we just keep on …keppin on.  Nothing softens the blow life has dealt or the hole Melina’s disppearence has left us with but family friends certainly help us get from one day to the next. Somedays we even manage a laugh or two. Thank god for laughter….I swear it really feels good even if only for a short time.

Melina’s White Light will moving to a new site.  The address will still be the same but we needed a site that gave us more flexibility with creativity and other functional things I wanted.  I am hoping to have it up and running sometime this week.  I’m sure several of the pages will be underconstruction but immediate need to know info will be available.  We are trying to make it as easy as possible for people to register for the walk on-line with the ability to pay their fees with paypal or something like that.  So keep checking back and let me know how you like the changes.

In the NB world today I have a special request for prayers.  Many times I have mentioned Nick franca to you all.  He is a NB child who turned 21 just this year and has been fighting NB since his 15th birthday. We have known and been praying Nick and his family for a long time.  Melina treated with Nick where we first met him and his mom in NYC and then again in Philly.  they both started the ALK inhibitor study at the same time.  Nick has had an immensley tough year spending more of it inpatient than at home.  Nick is in trouble today and has been put in the ICU at his local hospital.  Things don’t look good but he is a fighter as most of our NB kids have learned to be. Please pray for his recovery, for his families breaking/worrried filled hearts.     

Its days like this that I wish I had a moutain top I could climb to that all would hear my voice as I scream HELP!!!! for so many beautiful souls who this monstrous disease is stealing from us……………………………………………. I think to date we are at 13+ kids that I knew or knew through their caringbridge sites whom have died from NB since my Melina went to heaven.  Heartbreaking!!!!!!!!!!!!!!!!

Lisa

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Cure Me I’M Irish -buffalo count down…3…2….1

Melina's 1st Cure Me I'm Irish Event

March 6 th 2010 Melina wore her USA Miller jersey with such pride at our first Cure Me Event. She looked so good that night.  I was worried all day that she wouldn’t be able to handle being at the event for the entire evening…but she did.  For her it was a fun night with a double edge sword.  She loved seeing her school friends and soccer team.  I would watch her from accross the room and see her giggling with all of them.  She enjoyed that so much but at the end of the night it made her miss being with them everyday at school or on the field.    When she told me I just hugged her and told her one day.   I still think of her that night with her friends.   That giggle….man do I miss that. Especially this week for some reason.  Many times as we flow through the day with the kids I have flashes of her being in the room and thinking at different spots how she woudl of giggled at that.  I could hear her giggle in my head and picture the faces she made while doing it.  It made me long to hear for real.  So much so that I almost thought of putting on a family home movie just so I could hear her.  But….I don’t think so….not yet!!!

I have been so busy helping to put this fundraiser together and make it a success that I am exhausted and the event hasnt taken place yet.  My sister Wendy and I have been putting all the baskets together for the chinese auction and let me tell you they are B..e..a-U-tiful.  There are tons that I want to put tickets in.  So far we are up to 105 baskets with several baskets being dripped off some time this week. 

 If anyone reading this offered a basket for our event if you could get it to me by Wednesday…Thursday the latest that would be great. If you need it picked up email me Melinaswhitelight@yahoo.com , leave me a message here or call/text me at 491-4001. Sam is home on spring break and  is my offical runner.

This Thursday I will be doing a radio talk show with Neil Boron at WDCX 99.5 fm from 4-6pm.  Dr. Giselle Sholler will also be calling in to talk with Neil and explain some of her research and goals.  I’m very excited about this but at the same time nervous. Most of you who know me…know that being in the spot light has never been a goal or favorite of mine.  But as Melina would tell me to do…zip up your man suit and do what ya gotta.  So that I will.  The purpose is to important. Changing the tide on Neuroblastoma is a must.  When you have a disease where the dealth rate heavily out weighs the survival rate something must be done.  And please if anyone does read up on the statistic for NB dont be fooled when they say 40-50% survival rate in newly diagnosed.  That survival rate is based on a 5 year survial statistic.  What is 5 years to a 2yr old or 5…6….or 13 year old.  Yahoo…they get to make it 7, 10, 12, or 18 years of age.  NOT good enough in my book!!   I know there are many disease that this can be true of but We lived the Neuroblastoma life.  We lost big time..to Neuroblastoma!!!!  And everytime another child who’s name we know, who’s face we seen or who’s parent we’ve spoken to loses their fight our tears fall heavily. It’s an unimagineable ache that you may learn to live with but one that never goes away.

I’m sorry if I;m getting to heavy.  The thought s that come to my head come out in my words and when I get started on this rediculous monster there is so much that pours out of me.

More on the party plans….Friday MWL will be on the weather outside with Aaron Mentkowski to advertise out event. Not sure of the exact time but we will be there somewhere around 5:15 and will problable air on the 5:30 or  6 pm  news. And of course my sister is going to make me talk again..Yipeee

Doors will open at 5pm for the event and the party will start at 5:01pm.  Last year we had a great time and I think this year everyone will enjoy their St. Patricks Day celebration especially since all the proceeds will go to try and lessen the suffer of kids fighting Neuroblastoma and hopefully giving them a future.

Oh, I forgot to mention our silent auction items:  How’s

a autographed Miller jersey…..

an autographed hockey stick autographed by larry playfair and the alumni…

Sabres tickets with awesome seats……

Sabres Team jersey fully autographed by the Team….

Sabres 40th Anniversary book signed by Lindy Ruff…..

and much…much more.

Some things may be live-Auctioned off. We thought that might add a bit O Fun to the night.

We will also have Beaded Lanyards made by a NB mom and her beading crew in Texas.  Her daoughter Erin started this during her fight with NB to raise money for research and her mom has continued with Erin’s Dream Lanyards since she passed in 2009.  The beads are beautiful and of high quality.  their may be a few that she made to represent Melina and all that she stood for.  I haven’t recieved those yet but there on the way.  I cant wait to see them.
We will also be selling Melina’s White Light / Cure Me Im Irish T-shirts this year.  Melina’s new logo will be on the front and Cure Me will be on the back.  All done in a rich purple. They will sell for $15 . Big and tall sizes a couple dollars more.

Well I think I told you everything I can remember. You’ll just have to come celebrate with us this Saturday at the UB Center for theArts …doors open at 5.

I know it won’t be the same without Melina running around smiling and giggling but Because of her we can never quit on the kids fighting and those that will be diagnosed tomorrow, next week, next month or next year.  They are counting on US!

God Bless all

Hope to see you there

Lisa

ps .  please excuse my misspelling. My brain is moving inten different directions and I’ve only had one cup of coffee so far…..so not enough!

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Smiles That Linger……

Today, one year ago ….in two different states and a few hours apart two of the brightest smiles became Angels.   Sam and Sydney’s smiles will always linger in my memory and have a place in my heart.  On many days I follow the lead of these wonderful angel parents to help me get through my days without my baby.   Please remember their families today.

 

Sam

Sydney

 

God Bless All
 Lisa
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On the road again….

Hi Friends & Family,

On the road to Boston to participate in the original ‘cure Me I’m Irish. In some ways it feels good to be on the road again but I keep having flashbacks of all our road trips with Melina. So many tImes we loaded the truck and headed out with such hope and optimism laughing and joining along the way. The ride home was generally very quiet with me turning my head …. Pretending to lookout the window so Melina could not see the tears that were silently pouring from my eyes.

I really just want Joe and I to enjoy ourselves. I know there will be some emotion moments. It will be the first time we reconnect with other NB parents and Dr. Sholler since Melina’s adventure in Heaven began. But I’m trying to focus on relaxing and having some laughs and enjoying the people around us. I think there will be a lot of ‘Repressing’ going on to make that all happen but as my friend Margot informed me Time Magazine said repressing was healthy. So i’ll go with the that.

I need to ask for some really serious prayers for a little boy named Sal. I’ve talked to you all about him before. He is in a tough situation and a lot of pain. He can use all the prayers we can send up.

Thank you Lisa

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Success is Sweet!!! and so were the biscotti….

Our Wear House Event was a big success.  I met the owner of the Wear House by walking into her store one day asking for a basket or gift certificate donation for our basket auction for the Cure Me I’m Irish (CMIR) event.  Instead she wanted to host Melina’s White Light and give us 15% of the sales.  I thought …shopping…beautiful jewelry…unique scarves etc.  Socializing with friends and family I hadnt seen in a long time….meeting new people……sharing a cup of coffee and munching on biscotti sounded like a win/win  situation to me.  I have to admit I had a few nightmares that we would be standing there by ourselves for the afternoon but they were  for naught because the place was packed most of the day. 

It was a lot of fun for all of us. I did meet many new people who I had only spoken to on the phone or through email. It was really nice to put faces to names.  The support we received was incredible. Even our little Italian customers from the garage dragged there husbands to a chic store to say hello to me and give me many…many hugs.  They were so sweet.

Several people ( some I had just me) gave me donations for the CMIR event or offered to put a basket together for me.  I swear they gave my heart a little jolt with their sincerity and generosity.

I have already receive the check from the owner of the Wear House totaling $367.03 .  Not bad for an afternoon of socializing and shopping and definitely better than a donation of a gift certificate for our auction. 

So Sandy….. Thank You for hosting Melina’s White Light at your store. Everyone had a wonderful time and enjoyed all the unique items you had to offer. 

We do have lots of pictures and will post them soon here and on facebook. 

CMIR-News:

Our event is right around the corner and we are trying to start to pull things together. If anyone has a basket for our Theme Auction ready and needs it picked up just let me know.  I’d be happy to pick things up for you or you can just drop them off at my house anytime 9511 Greiner rd Clarence or at our Auto repair shop J & L Auto at 1127 Hertel ave and just give it to Joe. We are still in need of baskets so any contribution would be such a great help.

 If anyone is interested in buying or selling raffle tickets for our awesome raffles: Yankees/Boston Sept. 2 nights in NYC, paid travel via Amtrac in a private car, paid stay at the Hotel Penn for two nights, w/ tour and sightseeing $10ea. or 3 for $20. That’s like a $2,000 trip for a $10 chance unbelievable!  

We have a  iPad 16g Wi-Fi 3g bundle/$110 in iTunes cards, hard case for iPad, protective clear shied for iPad, ear buds and Shullcandy 50mm driver head phones $5ea. or 5 for $20. Who wouldn’t want a $1000.00 iPad bundle for a  $5 Chance?????  My kids and nieces plan on dropping a lot of tickets in this raffle.  They want the iPad and the Skullcandy head phones.  I told them save your money honey’s….

I wanted to thank everyone who has stepped up to help us with all our events.  We could not be successful with any of them if it were not for your compassion, sincerity and support.  I do know how many causes are out there vieing for you donations as well. Many of them are worthy causes to.  But for Joe and I as you all know it is bone searing personal.  Not just because my daughter fought and lost to Neuroblastoma but also because Joe and I know the names and faces of at least 11 babies, toddlers and kids who have lost their fight since our Melina went to heaven. And THAT is unacceptable to US.  My heart aches for our loss but also for the parents, siblings and families who are struggling through this journey called Grief.

At our Event Dr. Giselle Sholler we be there to give everyone a peak at the research she is working on and the specific purpose for it.  I can’t wait for you all to meet her.  So Please mark your calendars for March 19 Cure Me I’m Irish at the UB Center for the arts off Maple road. The doors open at 5pm -10pm.

My Nick had some minor surgery last Friday but is doing very well. Hopefully he will return to school soon.  I can’t tell you how nice it was to have a fixable medical problem. I can tell you that clocking another 2hrs in the Childrens Hospital surgical waiting room while Melina’s surgeon worked on Nick was NOT fun. Believe me we left that hospital as fast as possible.  the care was top notch but the memories were to much to handle.

I hope to see you all at our event or sooner. Please pray our NB family. Many are starting new treatments, searching for one or just trying to hang on…

God Bless you all

Lisa

PS  I miss hearing from everyone….leave me a message if you’d  like…

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