Hello everyone, it's been a while since I've posted but I want to keep everyone updated on the progress going on with Neuroblastoma. Currently many children are waiting for a new 3F8 treatment to save their lives. This treatment is unavailable because there is no money for research or production as usual. How can we fix this? A non-profit organization, Arms Wide Open, is up to possibly win $250,000 from the Pepsi Refresh Program. All you have to do now is vote and tell everyone else to vote! This grant is so important for Neuroblastoma research and hopefully a new break through in treatment. Right now they are in third place and we have 5 days left to vote. Please please help us out and vote!
Sunday, September 26, 2010
Friday, August 6, 2010
NB Walk Tomorrow Morning at 9am
Tomorrow is finally the day of the walk. I hope as many people as possible show up and if you are in the area, bring all of your friends and family. Please email me if you have any questions for tomorrow: driniolo@yahoo.com.
Curing childhood cancer is serious business and Neuroblastoma is a cruel murderer i hope will soon perish with the help of all of your support. Please check my Aunt's Caring Bridge blog at http://www.caringbridge.org/visit/missmelina where she has kept us updated on Melina's health for years and now shares the heartbreak of losing her. Please read her last posting of a few days ago to understand why this fight is so personal to us:
At least twice a day I sit at my computer and click on this page. Sometimes with the intent to update. Sometimes to see if anyone has stopped by and other times just out of habbit. This site has been my hub of communication , my outlet to release stress for such a long time. Lately though each time I stop by I’m not sure what to type. I lay my fingers on the computer keys and they just sit there unmoving.
What should I say? What would everyone like to hear? There are so many things going on in my head, my heart and my house. So many times I wish I could give a usual post like... ‘ Melina is doing well. New Plan B seems to be working. She is smiling and laughing with the gal pals. Eating, drawing taking care of Cosmo’. But you all know I can’t write that.
Shall I tell you that we are all doing good. That each day is getting easier. That we are adjusting to our new ‘normal’. I wish I could... but the truth is that it doesn’t get easier...it gets harder. We are all functioning but I wouldn’t use the words ‘doing good’ and I don’t even know what the word ‘normal’ means anymore.
Each day that we get farther away from June 3rd I think the layer of ice that formed around my heart the day Melina died thaws a little bit. The fog from in front of my eyes clears a little more. Both bringing in their motions the reality that we must live with. Some days this is extremely hard because flashes of Melina will pop in front of me. Just for a second or two. I’ll see her laughing at something she said..leaning in to kiss my cheek...hearing her whisper in my ear over and over again how very much she loves me. Then the memory is gone and it hits harder knowing that I will never experience those moments again.
I think of her all day. I smile at pictures of her. I talk about her with the kids and Joe. I do realize that she is gone but I push away the pictures of her from her last week of life. When frames of her face the moment she took her last breath pop into my vision I change my mental channel. Its how I make it through each day and I’m pretty sure it works the same for Joe. There are times when all the pushing away and channel changing just doesn’t work for either of us. Those are very long ...hard days...but so far we have gotten through them.
Today is two months since Melina went to Heaven. Since then the mechanics of life has gotten easier. No more rushing from one state to another for treatment or check up. No more hustling like manics to get home to a varsity football game. No more inpatient stays, transfusions or IV poles. No more all nighters listening the IV machines. No more searching frantically for a Plan B.... Now we can go for coffee anytime we want. Hop in the truck and go to the movies on a moments notice. Make dinner plans with friends. Take a vacation. Plan a vacation. Hit the mall for an entire afternoon. Sounds like a turn towards the positive doesn’t it but trust me Joe and I would take treatment (in whatever state) again, along with all the hectic, lonely, confining, restrictions it brings in a heartbeat to be able to have her back. Even if it meant we never went out and watched movies on the couch and ate steak hoagies and chicken wings forever.
Monday August 9th Melina would have turned 14. Watch for her christmas tree on the front lawn because we are going to lite it up for her. It will be like her very own Blue Spruce cake and the lights will be her candles.
For today I will do what I have been. Try to stay busy..pushing and changing channels when necessary. Its time to get Sam ready for his first year at Clarkson University. Nick is starting double session workouts to prepare for his senior year of football. Angelina is watching over me and getting excited to start the 7th grade soon. Joe just like me is trying to stay a float.
With all this sadness dripping from my update I do feel as thought I have many things to be thankful for. Although I would prefer to have Melina with me In my arms I am thankful she is with Jesus and not alone. I am thankful that God allowed Melina to be my sister Wendy’s angel and push her to fight for her life. I am thankful that Sam, Nick and Angelina are healthy and mine. I am thankful for all my family and all the comfort they surround us with. I am thankful for all the wonderful people who got to know and love Melina and in turn have become apart of our family. I am thankful God has provided me with my soul mate. If not for Joe I would be in the luney bin right now.
Please pray for all the kids fighting this horrid, horrid disease. Pray that they never run out of Plan B’s.
This Saturday in San Jose California my niece Danielle will be holding her first NBWalk. She has worked so hard towards this goal at first for Melina and now in her memory. Uncle Joe and I are so proud of you Danielley. If anyone is interested in donating to her walk even though it is in California you can do so at
www.firstgiving.com/nbwalkca . September is National Childhood Cancer Awareness Month so stay tuned. I’m sure Melina’s White Light will cook something up to spread awareness.
Thanks for listening, supporting all our efforts and just checking in.
God Bless
Lisa
Curing childhood cancer is serious business and Neuroblastoma is a cruel murderer i hope will soon perish with the help of all of your support. Please check my Aunt's Caring Bridge blog at http://www.caringbridge.org/visit/missmelina where she has kept us updated on Melina's health for years and now shares the heartbreak of losing her. Please read her last posting of a few days ago to understand why this fight is so personal to us:
At least twice a day I sit at my computer and click on this page. Sometimes with the intent to update. Sometimes to see if anyone has stopped by and other times just out of habbit. This site has been my hub of communication , my outlet to release stress for such a long time. Lately though each time I stop by I’m not sure what to type. I lay my fingers on the computer keys and they just sit there unmoving.
What should I say? What would everyone like to hear? There are so many things going on in my head, my heart and my house. So many times I wish I could give a usual post like... ‘ Melina is doing well. New Plan B seems to be working. She is smiling and laughing with the gal pals. Eating, drawing taking care of Cosmo’. But you all know I can’t write that.
Shall I tell you that we are all doing good. That each day is getting easier. That we are adjusting to our new ‘normal’. I wish I could... but the truth is that it doesn’t get easier...it gets harder. We are all functioning but I wouldn’t use the words ‘doing good’ and I don’t even know what the word ‘normal’ means anymore.
Each day that we get farther away from June 3rd I think the layer of ice that formed around my heart the day Melina died thaws a little bit. The fog from in front of my eyes clears a little more. Both bringing in their motions the reality that we must live with. Some days this is extremely hard because flashes of Melina will pop in front of me. Just for a second or two. I’ll see her laughing at something she said..leaning in to kiss my cheek...hearing her whisper in my ear over and over again how very much she loves me. Then the memory is gone and it hits harder knowing that I will never experience those moments again.
I think of her all day. I smile at pictures of her. I talk about her with the kids and Joe. I do realize that she is gone but I push away the pictures of her from her last week of life. When frames of her face the moment she took her last breath pop into my vision I change my mental channel. Its how I make it through each day and I’m pretty sure it works the same for Joe. There are times when all the pushing away and channel changing just doesn’t work for either of us. Those are very long ...hard days...but so far we have gotten through them.
Today is two months since Melina went to Heaven. Since then the mechanics of life has gotten easier. No more rushing from one state to another for treatment or check up. No more hustling like manics to get home to a varsity football game. No more inpatient stays, transfusions or IV poles. No more all nighters listening the IV machines. No more searching frantically for a Plan B.... Now we can go for coffee anytime we want. Hop in the truck and go to the movies on a moments notice. Make dinner plans with friends. Take a vacation. Plan a vacation. Hit the mall for an entire afternoon. Sounds like a turn towards the positive doesn’t it but trust me Joe and I would take treatment (in whatever state) again, along with all the hectic, lonely, confining, restrictions it brings in a heartbeat to be able to have her back. Even if it meant we never went out and watched movies on the couch and ate steak hoagies and chicken wings forever.
Monday August 9th Melina would have turned 14. Watch for her christmas tree on the front lawn because we are going to lite it up for her. It will be like her very own Blue Spruce cake and the lights will be her candles.
For today I will do what I have been. Try to stay busy..pushing and changing channels when necessary. Its time to get Sam ready for his first year at Clarkson University. Nick is starting double session workouts to prepare for his senior year of football. Angelina is watching over me and getting excited to start the 7th grade soon. Joe just like me is trying to stay a float.
With all this sadness dripping from my update I do feel as thought I have many things to be thankful for. Although I would prefer to have Melina with me In my arms I am thankful she is with Jesus and not alone. I am thankful that God allowed Melina to be my sister Wendy’s angel and push her to fight for her life. I am thankful that Sam, Nick and Angelina are healthy and mine. I am thankful for all my family and all the comfort they surround us with. I am thankful for all the wonderful people who got to know and love Melina and in turn have become apart of our family. I am thankful God has provided me with my soul mate. If not for Joe I would be in the luney bin right now.
Please pray for all the kids fighting this horrid, horrid disease. Pray that they never run out of Plan B’s.
This Saturday in San Jose California my niece Danielle will be holding her first NBWalk. She has worked so hard towards this goal at first for Melina and now in her memory. Uncle Joe and I are so proud of you Danielley. If anyone is interested in donating to her walk even though it is in California you can do so at
www.firstgiving.com/nbwalkca . September is National Childhood Cancer Awareness Month so stay tuned. I’m sure Melina’s White Light will cook something up to spread awareness.
Thanks for listening, supporting all our efforts and just checking in.
God Bless
Lisa
Wednesday, July 21, 2010
Cure Childhood Cancer
For those of you who don't know, virtually no money for cancer research is allocated for childhood cancer research. It's true we all know that children get cancer just like adults do, and it's true most people know of leukemia. But try to name some other childhood cancers and you'll probably have a pretty tough time.
The only way we can try to save the innocent children that die from cancer is to help promote the research of individual cancers. The Neuroblastoma Alliance continues to put 100% of all donations into their research and treatment of neuroblastoma patients. This fund raiser along with so many others, are the only way the Alliance can continue to try to save our kids. This means it is up to us to make the difference.
Please take some time to check out the Neuroblastoma Alliance at www.nballiance.org
And visit www.firstgiving.com/nbwalkca to make donations.
The San Jose, Ca walk will take place on:
Take a stand. Cure Childhood Cancer.
The only way we can try to save the innocent children that die from cancer is to help promote the research of individual cancers. The Neuroblastoma Alliance continues to put 100% of all donations into their research and treatment of neuroblastoma patients. This fund raiser along with so many others, are the only way the Alliance can continue to try to save our kids. This means it is up to us to make the difference.
Please take some time to check out the Neuroblastoma Alliance at www.nballiance.org
And visit www.firstgiving.com/nbwalkca to make donations.
The San Jose, Ca walk will take place on:
| Saturday, August 7, 2010 | |
| Time: | 9:00am - 2:00pm |
| Location: | Orchard Community Church |
| Street: | 157 E Rincon Ave |
| City/Town: | Campbell, CA |
Take a stand. Cure Childhood Cancer.
Monday, July 19, 2010
Buffalo Cancellation
Hey all,
Just wanted to let you know, the Buffalo walk is officially cancelled. You can still make donations if you want to online, at www.firstgiving.com/nbwalkny
If you want a shirt let us know asap because Danielle is ordering them soon so they will be on a first come first serve basis. Shirts are $20, and $10 for kids UNDER 12. Let us know your size and you can either donate the money on the website and write that it is for a tshirt in the comment box or you can mail it in to PO Box 67 Clarence NY 14031
The San Jose walk is still going on and doing really well!
Just wanted to let you know, the Buffalo walk is officially cancelled. You can still make donations if you want to online, at www.firstgiving.com/nbwalkny
If you want a shirt let us know asap because Danielle is ordering them soon so they will be on a first come first serve basis. Shirts are $20, and $10 for kids UNDER 12. Let us know your size and you can either donate the money on the website and write that it is for a tshirt in the comment box or you can mail it in to PO Box 67 Clarence NY 14031
The San Jose walk is still going on and doing really well!
Sunday, July 18, 2010
BUFFALO UPDATE
Hello, everyone.
We have some unfortunate news about our Buffalo event. While Lisa and her family were in California, her motherz, Wendy, took a very unfortunate turn in health and was rushed into the emergency room. Before midnight we were told that her brain was bleeding and her chances did not look good. As our family gathered in the emergency room only a little more than a month after losing Melina, we prayed for Wendy and asked Melina to help guide her through and kick her in the butt to get better. Just after 5:30 am, she was wheeled into the operating room and a surgery that we were told could last anywhere from 2-10 hours was finished in 1 and a half.
Wendy is still spending her California vacation in the ICU and though everyday she is looking better and better, her recovery time will be long before she can leave San Jose. This means that Lisa will probably not be back in time for the Walk. With other family members planning to come back to drive Wendy the three thousand miles home, they also will not be able to plan the New York walk. We are in the process of finding people to take over and if you are interested please let us know immediately, because right now the plans are the cancel the walk.
We will update soon and either way, donations will be taken on behalf of the Buffalo walk and t-shirts are still available to buy, though the actual event may not take place.
If you are interested in taking a leadership position to get the walk going please email Lisa Johnson (event planner) or Lisa Riniolo (Melina's mother) at LMRiniolo@roadrunner.com
In other notes, I will be putting in the t-shirt order very soon so please let Lisa know immediately if you would like a tshirt.
-Danielle
We have some unfortunate news about our Buffalo event. While Lisa and her family were in California, her motherz, Wendy, took a very unfortunate turn in health and was rushed into the emergency room. Before midnight we were told that her brain was bleeding and her chances did not look good. As our family gathered in the emergency room only a little more than a month after losing Melina, we prayed for Wendy and asked Melina to help guide her through and kick her in the butt to get better. Just after 5:30 am, she was wheeled into the operating room and a surgery that we were told could last anywhere from 2-10 hours was finished in 1 and a half.
Wendy is still spending her California vacation in the ICU and though everyday she is looking better and better, her recovery time will be long before she can leave San Jose. This means that Lisa will probably not be back in time for the Walk. With other family members planning to come back to drive Wendy the three thousand miles home, they also will not be able to plan the New York walk. We are in the process of finding people to take over and if you are interested please let us know immediately, because right now the plans are the cancel the walk.
We will update soon and either way, donations will be taken on behalf of the Buffalo walk and t-shirts are still available to buy, though the actual event may not take place.
If you are interested in taking a leadership position to get the walk going please email Lisa Johnson (event planner) or Lisa Riniolo (Melina's mother) at LMRiniolo@roadrunner.com
In other notes, I will be putting in the t-shirt order very soon so please let Lisa know immediately if you would like a tshirt.
-Danielle
Thursday, July 1, 2010
Registration brochures!
The registration brochures in Buffalo are available in these places:
J & L Auto Repair on Hertel Ave in North Buffalo
A & R Automotive on Hertel Ave in North Buffalo
Dash's Market on Main Street in Clarence
Goodrich Coffee on the corner of Main and Goodrich in Clarence
J & L Auto Repair on Hertel Ave in North Buffalo
A & R Automotive on Hertel Ave in North Buffalo
Dash's Market on Main Street in Clarence
Goodrich Coffee on the corner of Main and Goodrich in Clarence
Wednesday, June 23, 2010
Buffalo Update!
Hey everyone,
this update is just for the Buffalo walk:
a new registration form will be up shortly and available for download.
they will also be available for pickup at Dash's on Main Street, at Goodrich Coffee on the corner of Main and Goodrich, at Uncle Joe's Garage on Hertel, or by contacting me, Lisa, at (716)-491-0529.
We will have two big raffles after the walk, one is an ipod package, and the other is a travel package.
We are looking for sponsors, and a $250 donation gets your name on the back of our shirt!
If anyone wants to help out, please don't hesitate to contact us!
Help us spread the word! Tell your friends, ask them to walk with you, or to sponsor you if they don't want to walk.
Love, Lisa
this update is just for the Buffalo walk:
a new registration form will be up shortly and available for download.
they will also be available for pickup at Dash's on Main Street, at Goodrich Coffee on the corner of Main and Goodrich, at Uncle Joe's Garage on Hertel, or by contacting me, Lisa, at (716)-491-0529.
We will have two big raffles after the walk, one is an ipod package, and the other is a travel package.
We are looking for sponsors, and a $250 donation gets your name on the back of our shirt!
If anyone wants to help out, please don't hesitate to contact us!
Help us spread the word! Tell your friends, ask them to walk with you, or to sponsor you if they don't want to walk.
Love, Lisa
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