About Grandparents in Action

Grandparents in Action (GIA) is an informal association of grandparents directly impacted by having a grandchild who was diagnosed with cancer and are dedicated to improving the WhatCausedUsTo_edited-1outcomes of children with cancer, ages infants to 19.

GIA was created by a group of grandparents who are members of the Coalition Against Childhood Cancer (CAC2), who live in different states and never would have met but for the fact that their grandchildren had/have cancer – their individual missions brought them together in support of the same objective, to find a cure for all childhood cancers!               SPACE      SCAC2Support2_edited-1

Objectives:

Our objective is to support CAC2 and it’s goals and objectives.

Through our support, membership and participation, our intention is to build public awareness to the needs of children with cancer and seek to inspire hope and courage not only in the children with cancer, but also in their families, friends, and others in their and our communities.

If you are a grandparent who has been directly impacted by pediatric cancer, we invite you to join our cause! Together we can give a voice to our legacy.

Join our Facebook group! Chick the link below and then “like” our page by clicking on “Like” (look for the thumbs up symbol).

GIAFBAD_edited-1

 

34 Responses to About Grandparents in Action

  1. Karen Rodgers says:

    I have a 5 yr old grandson that was diagnosed with tumor to brain stem. There is no cure. Has been through a lot. Just hoping and praying every day for that miracle.

    • Team Captain says:

      Karen, so sorry to hear that. Your family will be in our thoughts and prayers.

      • Karen Rodgers says:

        My 5 yr old grandson diagnosed with DIPG brain stem cancer lost his battle on May 8 2014. Our hearts are broken. My courageous daughter has donated his tumor for research of this deadly disease. Our hope is to find a cure.

      • Mary Scharrenberg says:

        Oh, Karen….I’m so very sorry. It will be three months tomorrow for us and I know well how devastated you and your family are. My 6 y/o granddaughter’s tumor was also donated — to an amazing medical researcher at Stanford Hospital — and we, too, are praying that it helps in finding treatments and a cure. We also are dipping our toes into efforts to raise awareness of this horrible monster and money for research. It helps a little. If you want to communicate with me, you can email me any time at mscharrenberg@gmail.com.
        I’m praying for you. Mary

      • Team Captain says:

        Karen, I am so sorry. The type of cancer your grandson had was one that very little is know about it. Your daughter’s most difficult decision to donate his brain tissue will go a long way in researching a cure for others. I only wish your grandson could have benefited from research done before he was diagnosed. Tissue donations will make a difference.

    • Memere' says:

      we have had the same painful experience,, you are in our prayers

  2. Jeff Leavoy says:

    My wife and I are the grandparents of a “forever 2” granddaughter who passed away from AT/RT brain cancer in 2012.

    Please send me more information about your organization so we can decide if our participation would be appropriate.

    Thank you

  3. Teresa Lute says:

    I have a 5 year old grandson who was diagnosed with ALL on his 3rd birthday. He is still undergoing chemo and is a brave little warrior. Too many children suffer from cancers of all types and their resilience during their journeys is truly amazing. I have also been humbled by the outpouring of kindness and caring of so many friends, acquaintances, and strangers that I have witnessed since our journey began. I am glad to see this forum dedicated to the grandparents and look forward to it becoming a viable support venue. I hate cancer!

  4. Doug Howison says:

    I a Grandfather who lost our 12 year old Granddaughter to DIPG in 2010. We lived in Illinois at the time, and Ineas still working. We made the decision to move south. I retired we sold our home in Illinois and we moved to Lakeland Florida. We live in an over 55 community and after getting down here we found that there was not a Chapter of The Cure Starts Now in Florida, so we started a Florida chapter. We also have started Cans for the Cure. A program where we collect aluminum cans from the entire community every Monday evening, crush them, and take them to a scrap dealer. Theory we collect them is sent to The Cure Starts Now. It’s not a lot of money, but it’s something people out age can do to help. We have been reasonably successful and have raised awareness within our community.

  5. Mary Scharrenberg says:

    My granddaughter was diagnosed with DIPG on her sixth birthday (10/28/13) and died only three and a half months later on 2/12/14. I promised her that I would spend the rest of my life working to raise awareness and funding for childhood cancer treatment. To that end, I am very anxious to join with other grandparents who share that goal. What can I do? What are you planning?

    • Jeff Leavoy says:

      Hi Mary,

      Our first grandchild passed away two weeks after her second birthday from a rare form of brain cancer now known at AT/RT. Since she passed in 2012, my wife and I have been searching for the same opportunity to make a difference that you described in your posting.

      There are several initiatives across the country, big and small, designed to fight and defeat the childhood cancer monster. I’m willing to bet that if you reach out to those parents and grandparents in your community that have battled the childhood cancer monster, they can point you to several local initiatives.

      In addition, the HEMOC unit in your local children’s hospital will have some information, as will support groups located around the country like Ronald McDonald House, etc.

      One simple initiative that I have been participating in is trying to light the world gold each September in honor of Childhood Cancer Awareness month. A good web site that describes this initiative is located at: https://www.facebook.com/yellowandgoldforcole

      Another important initiative involves raising funds for childhood cancer research. There are many organizations trying to do this, big and small, but the largest private organization making a difference with childhood cancer research funding is: http://www.stbaldricks.org/

      I hope this provides you a little insight into some of the options available to assist with the childhood cancer war – a war that will not be won until we find a way to help each and every child afflicted with this most awful of diseases.

      God bless,
      Jeff

      • Mary Scharrenberg says:

        Thanks, Jeff. I’ve researched many programs during these past few months….St. Baldricks is amazing!…and even joined one or two. My daughter and son-in-law are working on starting their own foundation and I hope to have a role there. My “dream” (perhaps a pipe-dream in actuality), though, has been to find or start something run by grandparents (of grandchildren who were killed by this monster or have suffered and survived and, ideally, those whose young ones have not been touched by childhood cancer). As I have looked over this sad landscape I see so many nonprofits and other organizations which are, literally, “mom & pop” in nature….founded by heartbroken parents. It strikes me as shameful that our children….who have already suffered so much and are either grieving their babies’ deaths or are still helping their kids fight the battle of a lifetime….. must also shoulder the responsibility of trying to raise awareness and funding. They do a wonderful job at it….but wouldn’t it be nice if our generation could take over? As I say…that’s just my dream.

  6. Jan King says:

    My granddaughter was diagnosed with hepatoblastoma at age 2 & underwent a liver transplant in Dec. 2012. Today she is having all of her teeth capped because of damage caused by chemo treatments. How can I join?

  7. Pamela Himot says:

    I am a Neuroblastoma grandparent, My grandson was diagnosed at 13mos. stage IV. He is now 3yrs. old and on a first name basis with every one who works at CHLA .and Rady (CHSD) Oncology. He has been in several trials and, so far, he has had two moments of NED followed by relapses.

  8. You are all so brave and loving.. I have been an Oncology/Bone Marrow Transplant, Hospice nurse for over 30 years.. So often Grandparents are left out of the process. Not only are you losing a grandchild, you are witnessing your child losing their child.. I am in the process of building a free standing pediatric and young adult palliative care home here in Seattle. We will offer free respite and end of life care to the ENTIRE family. We will support, parent, sibs, grandparents and significant others.. We will have a kennel for family pets.. We will have family suites so the entire family can be an intact unit. We will have large Skype TVs so that families can stay connected with those far away. Our hope is to make Seattle the first and with awareness, support and funding build a Ladybug House in every city. http://www.ladybughouse.org Please check us out and if you would like more info I can be reached at Suzanne@ladybughouse.org.

  9. peg solomon says:

    My name is Peg. My granddaughter was diagnosed with a very rare form of adult liver cancer when she was 6. She is now 9 and doing well. Of course, we live in terror that it will return. Having never given it a thought before this, I am appalled at the state of children’s cancer research. I’d like to be part of this group and help to do something about this. Thank you for existing!

  10. Patty Standley says:

    I am a grandma who lost her grandson Kaleb to brain cancer 8-12-13. Forever Five. Love and miss so much.

    • Jeff says:

      Hello Patty – I am very sorry for your loss. My wife and I lost our first grandchild, our beautiful granddaughter Anna Rose, to a rare form of brain cancer known as AT/RT on 2/19/12, thirteen months after she was diagnosed and just two weeks after Anna’s second birthday. So, Anna will be “forever two” in our hearts and minds.

      We also miss Anna very much, and time does not really soften this feeling. The best way that I have found to describe this impact to others who have not lost a child in this way is to compare the feeling to someone who has lost a limb, like an arm or a leg. Over time, you learn to live with the loss, but life is never even close to the same. Something is always missing.

      From the beginning, my wife and I have focused on supporting our children as they have suffered through this agonizing ordeal. We continue to try and help them get through each day, which then helps us get through each day. We have no answers, and we realize that we will never understand why this occurred until sometime in the distant future. However, we must continue to try and keep it together, one day at a time, for our family’s sake.

      Please join me in believing that Kaleb and Anna are playing together right now in Heaven with their other new friends who are now free from the childhood cancer monster, and they can now enjoy the things in Heaven that they were denied right here on Earth.

      God bless,
      Jeff

  11. teresa rocks says:

    Hi my name is Teresa. I am raising my grandson Avien. He was diag. With Pre B ALL Standard Risk on 9/18/13. He is now 5 years old and in maintenance. This is the first time i have seen this page. Avien is like my own son. I call him my son, and he calls me mommy.

  12. Mary Scharrenberg says:

    Hi, Teresa! So wonderful that your little Avien is in maintenance. Where do you live? Do you have other grandchildren? As you can see, I’m pretty nosy but it’s good to connect with other grandparents who share this horrible cancer bond. I’m in California and part of this group because my precious granddaughter, Jennifer, died from dipg (brain tumor) in February, 2014 just three and a half months after being diagnosed….on her 6th birthday. I’m so glad that your little one didn’t meet that fate. Mary

  13. Michele Holmes says:

    Hi, my grandson Landon was diagnosed with Stage 4s Neuroblastoma last August. He was 8 months old. He has finished his chemotherapy and stem cell transplant and is currently undergoing radiation therapy. I have been involved in the #MoreThan4 campaign, tweeting, emailing, posting on Facebook as much as I can trying to get the word out about the need for pediatric cancer awareness. We live in Missouri and I have written letters to both Roy Blunt and Claire McCaskill about our requests to be heard about the budget meetings concerning the 2016 NCI budget. I will continue to do that, what else can I do? What is needed?

  14. Pat Smith says:

    My 5 yr old granddaughter was diagnosed with high risk ALL (hypodiploid type) in Jan 2015.She had a cord blood stem cell transplant in June of 2015 at Duke ‘s pediatric transplant unit in Durham, NC.She came home the end of Oct cancer free.We pray that this remission is permanent.

  15. Susan Bucher says:

    When people ask me how do you do it – I just answer them one day at a time and prayer.
    Our Drew was diagnosed with T cell ALL at the age of 4. Our world came crashing down! But we survived and so did Drew!! Our daughter started Cowboy Up For A Cure. A non profit to help
    others with cancer and their families.

  16. Such an amazing support. Joe can you please clone yourself Ladybug House would love one of you too please.
    Thank you for all you do.
    Suzanne

  17. Holly Heil says:

    I live in Germany but my daughter lives in Castle Rock Colorado; her son “first child” was diagnosed at 5 months with two forms of Leukemia having a rare genetic negative side to it. Maxwell is fighting and in the fourth round of chemotherapy with his 9 months of age. We will never give up and my daughter and her man are strong committed parents. I have no money but I have a computer and wish to help how ever I can. Please let me know what I can do. With friendly greetings Holly

  18. My grandson was diagnosed with cancer just before his first birthday. He fought stage 4 neuroblastoma and after 5 months of treatment and his stem cell transplant, Aiden passed just before Christmas in 2015 from sepsis and is forever 17 months old. Together with Aidens beautiful mom, my daughter, we started Aidens Army, a nonprofit organization that brings awareness to pediatric cancer, provides comfort items to children 2 and under with cancer, and raises funds for pediatric cancer research.

  19. Terry K says:

    My precious 5 yr old granddaughter has just been diagnosed with high risk neuroblastoma. I am beside myself. I am.single so I am alone. Times like this inwishni had a partner. Anyone have stats or info for me? I would not make it if she doesn’t. I’m numb, cry always n can’t sleep. Of course I remain positive in her hospital room & don’t cry. Doctors just told her today. Guess she is handling it better than mom & dad. Olivia & i have a very special bond. She is at mpls children’s hospital.
    Thank you!

    • Team Captain says:

      Hello Terry, my name is Joe, and am one of the founders of Grandparents In Action. I am sorry to hear that Olivia has been diagnosed with high risk neuroblastoma. I am a grandparent of a survivor of neuroblastoma. My grandson was diagnosed at 2 years old with high risk neuroblastoma. Today Conor is 12 and leading a pretty normal life. As you may already know, outcomes for this cancer are not guaranteed. NB has an 80% five-year survival rate. NB is not a death sentence, but it is a very serious cancer that could result in death. I offer the following advice for grandparents like us.
      1. Be prepared for a long treatment plan. At times, it will seem harsh.
      2. As a grandparent, you need to be a support for Olivia’s parents. Allow them to make the difficult decisions that will need to be made. The doctors will keep them informed every step of the way. They will be best prepared to make the decisions themselves and you should support them. Give advice and opinions only when asked. Grandparents tend to try to take care of their children AND the grandchild. You should not attempt to do that. Let them know you are there to help. Take a passive, but supportive roll. Do not appear to be meddling.
      3. Learn as much as possible so you will be informed as to what you and your family members are facing and you will be better prepared to handle the ups and downs of treatment. There are a lot of places you can get information on NB, but I suggest you start here. It’s black and white, truthful, without emotion. It’s from the National Cancer Institute: https://www.cancer.gov/types/neuroblastoma/patient/neuroblastoma-treatment-pdq
      4. Learn about pediatric palliative care. I would imagine that your hospital offers this, if so, embrace it. Straight talk here Terry, this is NOT HOSPICE. The goal of palliative care is to relieve suffering and provide the best possible quality of life for children and their families facing the pain, symptoms and stresses of a serious illness like cancer. It is appropriate at any age and at any stage of an illness. It will help the ENTIRE family during treatment and will even provide help after treatment when the child goes into survivor status.
      5. If you feel the need to talk, to someone, I would be glad to put you in touch.

  20. Pam Gray says:

    I lost my oldest granddaughter Megan less than two months ago to ALL. I don’t want another child to die….we must save our future

  21. My 18 month grandson has retinoblastoma this first year we’ve felt with the avalanche of emotions associated with cancer. We in our community have grown a fairly sizable platform and I wish to use this to raise awareness. Any suggestions would be greatly appreciated thank you

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