Provided By Parents, For Parents.

Volunteers and Advocates - Our Truest Angels

Posted on Mar 25, 2011

As we publish our March newsletter, there is much happening on the horizon for Lainie's Angels. In particular this month, we'll be sharing two very important aspects of our work I want you to know about.

First, there's a note from a parent advocate volunteer at Children's Hospital, Boston, Diane Scott, who speaks about the mission of parent advocacy from a first-hand perspective. It was Diane who introduced you all to Jamie Rose Connors and her heart-breaking poem, Things I Didn't Know I Loved, which we shared with you in our January newsletter. Diane supported Jamie's family through her treatment and death. In this article, she speaks about the importance of how parents, through the shared experience of losing a child, can assist one and other.

In addition, this month you'll be hearing from Beth, a parent advocate at Mt. Sinai hospital in New York City, who shares with us her own personal story and talks about the work she does to help parents like herself at Mt. Sinai. Each of the parent advocate stories we share with you bring all of us a deeper understanding of how much support the parents of children with cancer and blood disorders need, and how powerful and healing that help can be when it comes from someone who has been there, done that.

In other news, Lainie's Angels was chosen to participate in a survey conducted by the Rutgers School of Social Work, based on our leadership in the non-profit community. The survey is designed to help the state better understand the needs of non-profit organizations in New Jersey. We are honored to have been chosen to participate in this survey, and thank the Rutgers University School of Social Work for asking us to participate.

On Wednesday, March 30th, I will be making a presentation to the Leukemia and Lymphoma Society of Central New Jersey about the mission of Lainie's Angels, and I have been invited to join their advisory board on childhood cancer care. All very exciting news!

Finally, don't forget to purchase some coffee in support of Lainie's Angels as part of our Coffee Wars, which begin today at Woodrow Wilson Middle School in Edison, NJ. Read on for complete details.

Below, please check out our announcements for this month; we look forward to sharing more news with you soon. As always, we want to hear from you; please follow us on Twitter, or become part of the conversation on Facebook.

The Coffee Wars are Here!

Just a reminder that our Coffee Wars begin today at Woodrow Wilson Middle School in Edison, NJ. Please support the efforts of the students, faculty, administration and staff, as they battle it out to see who can sell the most coffee. The winning class will be announced on Thursday, April 14th, during the annual Lainie's Angels Student-Faculty Basketball game, now in its 9th year at Woodrow Wilson. All coffee sales from March 25th to April 14th will help support Lainie's Angels. Click on the "Coffee For a Cause" button on the right and help the students make this the biggest year ever for this very special event!

Special Movie Screening for Cancer Patients & Survivors

Join us on Tuesday, April 5th at 6:00pm for a special screening of the movie "Wrong Way to Hope" at the Morris Museum in Morristown, NJ.

Film Synopsis: Set against the dramatic backdrop of the Owyhee River gorge deep in the SE Oregon desert, a group of young adults embarks on an expedition of a lifetime that is made more significant as the core expedition members are all survivors of cancer. Led by 25 year-old survivor, Mike Lang, this inspirational group of survivors shares their personal stories and delves into the unique issues that face young adults with cancer as together they battle a completely new set of trials on the river. The result is an extraordinary journey of intense emotional and physical challenges combined with a rare insight into the lives of one of Canada's most under-served and unrecognized populations.

A Portrait of Parent Advocacy

This month, a parent advocate at Mt. Sinai Hospital in New York City shares what parent advocacy means to her

As the parent of a child who was treated for Leukemia from age 2 ½ - 6 years old, I often felt many times that I wished there was someone I could ask questions to as my son went through different stages of cancer treatment. At Mount Sinai, where I currently work as a parent advocate, I often encounter parents who are at different stages of treatment and want to talk about their children, lives outside of the clinic, family settings and school adjustment. I often encounter parents waiting for their initial consultation appointment, where a family will learn the appropriate treatment plan for their child. Recently, I met with a family who was in this situation and were visibly nervous and agitated. Talking with this family seemed to provide some comfort during this difficult period and helped pass the time while they waited for a crucial meeting with their doctor.

I also work with many families in the midst of their treatment. These families spend enormous amounts of time at the clinic and can be bored, stressed, tired and frustrated about the "medical bubble" that they are living in. My goal is to comfort them and empathize with them about their situation and often try to lighten their thoughts with jokes. One parent with a teenage boy had been really fed-up with coming to the clinic, getting infections, and missing peer experiences due to compromised immunity.

Once the mom had heard that I had been through treatment with my son, she started crying and stating how awful her life has been and how alone she has been during this period. She thanked me for spending so much time with her and listening and laughing with her during these long days. Other families seek me out and ask questions, such as "did this happen to you, or how did you deal with this....". I of course, do not have all of the answers but am always happy to listen and hear the parents work out their thoughts.

Finally, parents who are lucky to have children who finish their treatment are also in need of someone to talk with. In fact I have talked with two families this past month who are frightened to go off treatment, afraid of relapses and entering the " healthy world". These particular parents were so appreciative about talking about "life after chemotherapy" that when I left the clinic those particular days, I felt like I was really making a difference.

A Volunteer Spreads the Word...

Hi fellow LA fans,

I am a high school guidance counselor, and I lost a student I was very close with to cancer in October of 2008. She was 17, Jamie Rose Connors. (You may have read her incredible poem, which Lainie's Angels published a while back) Needing to do something constructive with my grief, I now volunteer in Oncology/Hematology at Children's Hospital Boston.

Every week I see the devastating effects of cancer and blood disorders on the patients and their families. In the Resource Room, where I spend most of my time, I constantly witness "the blind leading the blind" - please pardon the expression - as parents desperately attempt to help one another get through this harrowing ordeal one day (and night) at a time. I see firsthand how critical the work of the parent advocates provided by Lainie's Angels is. (Indeed, I am trying to help Lainies' Angels get a program going with The Jimmy Fund here in Boston, the partnership between Children's and Dana Farber Cancer Institute.)

This is vital work, and we need to help! So I appeal to all of us, as fans of Lainie's Angels, to reach out to our networks. I know I haven't yet begun to do what I can. Think what could happen if each of us: recruited 10 more fans, gave $50; and got a major donor to give money to the Lainie's Angels cause? Let's make it happen!


Diane Scott

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