What YOU need to know about Childhood Cancer Research Funding. From the fabulous People Against Childhood Cancer (PAC2)
Prior to Fathers Day 2007, I had not given much thought to how funding for cancer research worked. That all changed. I thought we would share some thoughts and observations based on my own experiences and our research. This only seeks to inform, raise questions and to provide a platform for discussion. Nowhere in here will we suggest what charity you should support. But, without the right amount of funds directed towards the right research, PAC2 will only continue to grow, and we really want to shut it down. Let’s just look at a few of the groups competing for your money.
- HOSPITALS: it may be difficult to determine what percentage of a donation to a hospital would be directed towards research into childhood cancer. Donations may cover operating costs, research into other diseases, and/or childhood cancer research.
- AMERICAN CANCER SOCIETY: In 2009 directed $0.007 (less than a penny) to childhood cancer research for every dollar of public support. (Total public support: $897,051,000 and total directed at childhood cancer research: $6,206,000. Source:ACS)
- LEUKEMIA & LYMPHOMA SOCIETY: directed $0.02 to childhood cancer research for every dollar of public support. (Total public support: $287,625,000 and total directed at childhood cancer research: almost $6,000,000. Source LLS)
- NATIONAL CANCER INSTITUTE: it’s your tax dollars at work. Over the past five years, it has directed between 3.6 and 4.0% of its total budget, an average of $176 million/year, to pediatric cancer. Why?
- CHILDHOOD CANCER GROUPS: on our list direct at least an average of $0.80 to childhood cancer for every dollar of public support. Please consider CureSearch, St. Baldrick’s, Alex’s Lemonade Stands, The Rally Foundation for Childhood Cancer Research and others. These guys direct money only to childhood cancer related causes, primarily research. And you’ve seen the PAC2 chevron picture…Awareness –> Funding –> Research –> CURE! -you know why we need $$$)
When a child is treated at a hospital, the hospital incurs costs and produces a bill for the treatment. The bill covers labor, drugs, supplies, new equipment, other operating costs and, if it has a facility, some is directed to research. Obviously not all hospitals have research labs, and the size and funding varies.
Many if not all hospitals have a fundraising arm. If you are at a facility that treats both adults and children, generally funds it collects support operating costs and additions the hospital may desire, and may go towards research. Research may be into treatment of any disease you can imagine. Some may go towards cancer research, both adult and childhood cancers. So, if you give to XXX Hospital, your money is directed towards many various causes, with an unknown portion related to childhood cancer research.
With hospitals, it would seem you need to ask if you can direct your donation to the cause you want to support.
Obviously, St. Jude is likely the hospital the majority of the public thinks of if and when they think of childhood cancer. Their marketing campaign is hugely successful. The post “What if….” has the actual data on St. Jude. In summary:
- St. Jude treats less than 4% of all the kids with cancer.
- St. Jude received $682 million in support (donations and bequest) and $82 million in grants from NCI, NIH, and, historically, organizations like CureSearch for Childhood Cancer, St. Baldrick’s Foundation, Alex’s Lemonade Stand Foundation and Rally Foundation for Childhood Cancer Research.
- St. Jude spent $282 million on research on all diseases, 36% of support.
- St. Jude fundraising expenses were $135 million. ALSAC admin and general costs were $51 million.
The American Cancer Society
The mission statement of the American Cancer Society (ACS) reads: “Founded in 1913, the American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. With more than two million volunteers nationwide, the American Cancer Society is one of the oldest and largest voluntary health agencies in the United States. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices.”
Many chose to become involved with the ACS fundraising events, including the “Relay for Life”. The funds collected by the ACS are used for many causes. The numbers, in millions:
Childhood Cancer Research – $6.2
Other Research – $143
Prevention – $177
Detection/Treatment – $129
Patient Support – $275
Management – $63
Fundraising – $222
Looks black and white to us. The numbers speak for themselves with regard to the funding for childhood cancer, but just to be clear, 0.6% of funds are directed towards research to cure the entire suite of childhood cancers.
Imagine you participate in a Relay-For-Life. You raise $1,000. $270 (27%) goes to admin and fundraising costs. Only $150 goes to any research, and only $6 of that $1000 you raised is targeted towards childhood cancer.
Overall, Charity Navigator gives ACS 3 of 4 stars but only 1 of 4 stars for efficiency. John Seffrin, Chief Executive Officer earns $685,884 or 0.06% of expenses. Program expenses (what it spends on the programs and services it exists to deliver) are 72%, management 6% and fundraising expenses 22%. Total revenue in 2009 was $897,051,000.
#1 -Are there ways to “direct” the money raised toward your cause? The ACS site provides the following options for “Donation Designation”; cancer research, breast cancer research, prostate cancer research, colorectal cancer research and lung cancer research. But is there a manner to direct your funds towards childhood cancer if your amount raised is significant?
#2 – Why, when less than 1% of the funds are directed at childhood cancer, do we see so many childhood cancer victims in the ACS literature?
(We know we’ll hear the “well research into adult cancers can benefit children” argument. Well, most adult cancers do not occur in children. And simple downsizing of adult doses is where we are at now, and the long term consequences have been demonstrated time and again and again and againto be simply unacceptable. We need targeted childhood cancer research!)
The Leukemia and Lymphoma Society
From its website: “The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, LLS has invested more than $600 million for research specifically targeting blood cancers.”
We’re sure many of you have had excellent experiences with the LLS. Many chose to become involved with the LLS fundraising events, including the “Light the Night” and “Team in Training”. The funds collected by the LLS are used for many causes. The chart shows the various things supported (Year End 2009 data). The LLS has stated that almost $6 million of its $288 million in total public support is directed to childhood cancer. That equals $0.02 for every dollar of public support. The numbers, in millions:
Research – $69
Patient & Community Services – $92
Public Health Education – $43
Professional Education – $9
Management & General – $24
Fundraising – $45
Childhood Cancer – $6
So, you raise $1000 for LLS: $240 goes to LLS fundraising, general and management costs. $21 is directed to childhood cancer.
Overall, Charity Navigator gives LLS 3 of 4 stars, and for fundraising efficiency, 2 of 4 stars. John Walter, the President, CEO earns $482,000 or 0.18% of expenses. Program expenses are 75%, admin 8% and fundraising expenses 18%. Total revenue last year was $277million.
#1 – Are there ways to “direct” the money raised toward your cause? I believe that national Light the Night teams raising over $100k may direct the funding? Anyone with experience?
#2 – As it is not readily apparent, has anyone seen the percentage of funds directed towards pediatric blood cancer research?
UPDATE – JULY 2009 – Here is a link to some information directly from LLS. Judge for yourself.
UPDATE – APRIL 2010 – We’re a little disturbed by LLS’s latest idea for fundraiser events. They’ve embarked on a Totally Baldacious campaign, where participants shave their heads. I know I’ve heard that one before….oh that’s right, St Baldricks has been doing that for many years solely in support of CHILDHOOD cancer research! Shame on you LLS…
UPDATE – AUGUST 2010 – from the LLS:
“LLS recently launched a research initiative focused on the long-term and late effects of today’s curative therapies – many of these quality-of-life limiting consequences impact pediatric patients differentially as children can live for decades after they are cured. LLS just committed more than $2 million to new projects in this research area, thanks to generous donors, and anticipate investing more than $5 million over the next 3 years, in order to make today’s cures safer.
We are also involved in the Alliance for Childhood Cancer –http://www.allianceforchildhoodcancer.org/acc/Main and the Pediatric Cancer Survivorship Legislation –http://www.capitolconnect.com/lls/contentpage.aspx?page=pediatricsurvivorship“
National Cancer Institute
The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government’s principal agency for cancer research and training.
Here is the NCI total funding and the amount directed to childhood cancer over the past five years averages $176 million/year, and ranges between 3.6 and 4%. Over that same period, average NCI breast cancer funding was 24%, prostate 5% and lung 5%. During 2009 NCI did direct an additional $49 million in ARRA funds to support TARGET Research.
A portion of that NCI funding goes to the Children’s Oncology Group, through CureSearch – to the tune of $46 million for fiscal year ending Feb 2009. CureSearch then takes that funding and distributes it back to COG hospitals (more below).
Why is Federal funding for breast cancer five times the dollars per person life year lost when compared to childhood cancer funding? Why is Federal funding for prostate cancer, with a 99% five-year survival rate, nearly five times the total amount given to all types of childhood cancer? Why?
We challenge the entire paradigm of the NCI funding for cancer research. Have you ever known scientists who could manage? Think of cancer as a sinking ship, with all of us on-board. Who do we care for first? We get the women and children to safety. And we know many grieving Mom’s who would give up their seat to any child. But what we have is first class seating, funding, for adults.
And finally, consider this from our friends at KIDS V CANCER: “DID YOU KNOW? Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.”.
Susan G Komen
Just for comparison….Susan G. Komen for the Cure, formerly known as Susan G. Komen Breast Cancer Foundation, was established in 1982 by Nancy G. Brinker. Nancy promised her dying sister Susan that she would do everything in her power to end breast cancer forever. Today, Komen for the Cure is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, they have invested nearly $1 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.
Overall, Charity Navigator gives SGK 4 of 4 stars, same as last year. For fundraising efficiency, SGK receives 4 of 4 stars, same as last year. Hala G. Moddelmog, COO, earns $532,000 or 0.18% of expenses. Program expenses are 83%, admin 11% and fundraising expenses 7%. Total revenue last year was $299 million. Course…that’s before they started suing….
Childhood Cancer Research Focused Fundraising
The largest federally funded (mostly) organization is CureSearch. The CureSearch National Childhood Cancer Foundation is dedicated to raising private funds for childhood cancer research for the Children’s Oncology Group, the world’s largest cooperative cancer research organization. CureSearch Children’s Oncology Group is a network of 230 hospitals nationwide and more than 5,000 physicians, nurses, and scientists whose collaboration, research and care have turned childhood cancer from a virtually incurable disease to one with an overall 78% cure rate.
CureSearch/NCCF is the grantee for the Children’s Oncology Group from the National Cancer Institute. They receive funds from NCI and distribute them to more than 230 Children’s Oncology Group member institutions in North America and around the world in support of clinical trials. In addition, they raise private philanthropic and non-governmental funds, which they also use to support the Children’s Oncology Group.
For fiscal year ending Feb 2009, Charity Navigator gives CureSearch 4 of 4 stars. For efficiency, CureSearch receives 3 of 4 stars. Joseph Woelkers, Chairman, earns $287,00, or 0.49% of expenses. Gregroy H. Reaman, Executive Director, Scientific & Medical Affairs earns $391,000 or 0.67% of expenses. Program expenses are 95%, admin 3% and fundraising expenses 2%. Total revenue was $56 million. Revenue included $46.5 million from NCI and $13.3 million in donations, private grants and corporate grants.
Here is a map of COG hospitals, and a list of COG hospitals.
Obviously CureSearch is not the only childhood cancer charity. PAC2 has assembled a list of wonderful childhood cancer fundraising organizations here. Please consider CureSearch, St. Baldrick’s, Alex’s Lemonade Stands, The Rally Foundation for Childhood Cancer Research and all the wonderful other organizations fighting for our kids. Here’s some great groups you can contact right here at PAC2. These guys direct money only to childhood cancer related causes, primarily research. And you’ve seen the PAC2 chevron picture…Awareness –> Funding –> Research –> CURE! you know why funding and research is needed!
Speaking from the heart, over the past 2-3 years, PAC2 has come to know, respect and believe in the great people in these organizations. We believe that they will find a cure. And we know they will work with you in virtually any capacity and are ALWAYS looking for leaders and volunteers. They will work with you directly to meet your needs. The best part is that the VAST majority (typically 80 – 90%) of any money you raise for them is directed towards cutting-edge research into childhood cancer. Period.
If we expand into other childhood cancer charities, there are so many other worthy causes that may not be research oriented but still need support; local family support organizations, the Ronald McDonald House, SuperSibs, American Childhood Cancer Organization, Make-A-Wish etc, etc. Not to mention the parent led Foundations, who may contribute to support, hospitals, or other. All needing your dollar.
Other diseases, local police, the United Way, March of Dimes, Red Cross, Save the Whales, World Wildlife Foundation, you get the idea. There are over 900,000 registered with the IRS. It must be a pretty competitive business eh?
The nature of the business is that it is a business. And we as consumers should know where our donations are going. And expect accountability. Transparency. Just like this note is attempting to be. If we’re wrong somewhere….please let us know.
In the end, it’s your call. Decide if you want $4 (ACS) or $21 (LLS) or, typically $800 (CC orgs on our list) of the $1000 you raise to go to childhood cancer research.
Research is the key to a cure.
Big Disclaimer – our thoughts, experiences and analysis of their financial data. We just wanted to inform and show the differences, raise a few questions for the community, and to say things that we think need to be said. We are NOT saying ACS or LLS is not right, they just aren’t focused on childhood cancer.
You are ALL already Rockstars, for continuing to fight this fight with me. For Ronan and all the other babes out their who are fighting this fight or will sadly fight this fight, in the future. I want to hug each and every one of you and tell you thank you. I wish I knew all of your faces and names so I could properly thank you all. Words cannot even express how thankful I am. Seeing the amount of support that has continued to flood in, keeps me going and strong. I know the love I have for Ronan, is going to change the world. I love you all for believing in our love so much that you continue to scream, yell, cry, and cuss for Ro. Until things start to change and Childhood Cancer gets the attention it deserves. With the help of my amazing Busy Little Bees, we put together an idea. For those of you who are out-of-town, or just cannot make it to the event, we thought this would be a great way for you to still be a part of our amazing night.
Thank you for your continued love and support. Thank you to everyone helping in making this event as fun and sparkly as Ronan. Thank you for helping his spirit, fire, and soul, live on. Thank you for being a part of something bigger than yourselves. Something life changing. You get that there is more to life than just “this.” You get that this isn’t just about Childhood Cancer. You get it and I appreciate that so much.
Details are below. I hope you think it’s as awesome as I do. I cannot wait to see our Rockstars in action:)
Garage is accepting Submissions thru November 4th of your children celebrating their inner rockstar! All entries will be entered into a “Rockstar” montage to be played the evening of “ROCK the RUNWAY for RONAN” on November 10th. These Rockstars will bask in the glory of their photos being shown on the Garage Facebook page, The Ronan Thompson website, the Brightest Star Facebook page and YouTube. One(1) submission will be drawn to win a Rockstar VIP swag bag from the event. Each photo entry should include the child’s name(or alter ego Rockstar name) telephone number, mailing address as well as an email address. A photo caption is optional.
Photos should be sent to Rockstar@GarageBoutique.com. Donations are required and can be made at RunwayforRonan.eventbrite.com (suggested donation amount of $25). 100% of donations benefit The Ronan Thompson Foundation, a 501(c)3, devoted to finding a cure for Pediatric Cancer.
By submitting a photograph and participating in the Contest, entrant, for him/herself and on behalf of the child, irrevocably transfers, grants and assigns to Garage LLC and The Ronan Thompson Foundation, its affiliates and its respective successors, assigns, and licensees, the right to use the name, likeness, image and photograph, including any reproductions of same, in any and all media for any advertising or promotional purposes, without additional compensation, and releases Garage LLC and The Ronan Thompson Foundation and any entity acting on their behalf from any liability with respect thereto.
FOR IMMEDIATE RELEASE:
Rock the Runway For Ronan
Garage Boutique’s Annual “Fashion for Philanthropy” Event
Benefiting The Ronan Thompson Foundation
October 17, 2011
Garage Boutique is a lively place, full of kids, designer duds and good shopping mojo. But Scottsdale’s premiere children’s boutique for infants and tweens isn’t just about clothes. Owner Katie Wilson believes in philanthropy, and her young customers do, too.
This year, local kids were invited to apply to model in The Garage Boutique’s Annual Fashion Show, which will benefit The Ronan Thompson Foundation. Maya Thompson, author of www.RockstarRonan.com, lost her 3-year-old son, Ronan, to neuroblastoma, a form of childhood cancer, in May 2011. Maya’s blog has captured the attention of millions of people around the world. The Ronan Thompson Foundation vows to change the fact that pediatric cancer is the least funded when it comes to cancer research.
Wilson said, “Garage isn’t just about style, fashion, & the cool sweet factor, but also about making an impact. My mission is to educate, inspire and empower kids to make a difference in their school, and community through volunteer work and community service. The 75 ‘Rockstars’ in The Rock the Runway for Ronan Fashion Show all committed to raising a minimum of $200 each for the Ronan Thompson Foundation.”
Maya had three main goals in mind when she started up Ronan’s Foundation. To support in research for Childhood Cancer, to help a local family once a year that has been affected by Childhood Cancer, and to help local charities such as The Ryan House and MISS Foundation. The Ryan House is a non-profit in Phoenix and helps care for families dealing with life threatening illnesses. It is where Ronan spent the last week of his life and it is where he passed away. The MISS Foundation is a non-profit and was started up by Dr. Joanne Cacciatore. They are committed to helping families in dealing with the loss of child, from any cause.
The Fashion Show is November 10, 2011 at Casa Blanca Lounge (7134 E. Stetson) in Scottsdale. Doors open at 6pm and the Fashion Show starts at 7pm. Tickets are $25, and available at: http://www.RunwayforRonan.eventbrite.com. Limited tickets are available. For more information, visit our Facebook page www.facebook.com/garageboutique.
Thank you to all our ROCKSTAR friends and family for your generosity and support! Please remember that occupancy is limited in our venue, so if you plan on attending it is important that you purchase your tickets in the next 24 hours. Don’t miss your chance to take part in this year’s most rocking event!
Ronan. What have you been doing? I miss you so much, baby. I don’t know where you are, who is taking care of you, what you are up to. I worry about you so much. All day and night. I’m still looking for you, everywhere. I went to Sedona, for the grief retreat. I’m back home now. I wish you were too. It’s so strange, being here without you.
Saturday was the day of the actual seminar. It started at 9:30 and lasted until 4:30, I think. I don’t remember much of it. There were about 16 other bereaved parents there. All with different/similar stories. Nobody there had lost their baby to cancer. Some had lost their babies very early on, at birth. Others had lost their children, tragically, in accidents or just suddenly because life is not fair, and death does not discriminate. We are all part of the same club. The club that nobody wants to be a part of. The fuckthisshitinowhavetoliveonthisearthwithoutmychildandidon’twantto club. It is not a fun club to be a member of. Nobody in that room on Saturday, wanted to out live their child. Everybody in that room on Saturday, would have traded places with their babies, in a heartbeat. But the choice was not theirs. They are still here, on this earth, fighting for their loved ones that were taken much too soon.
As soon as I got there, I felt uneasy. I went into shut down mode. We had to go around the room and tell a little about our story and what we hoped to achieve by being there. I don’t remember much about what I said. I was sobbing. I somehow managed to get out a little about you, in between my sloppy tears falling everywhere. I think I said out loud that I was only there because I don’t want to live this life anymore, without you. I don’t remember seeing anybody’s faces while I was sobbing/talking. I just remember wanting to run out of the room, so badly. I didn’t want to be there, having something like this in common, with all of those strangers. I wanted to close my eyes, snap my fingers, and hop into my time machine that would take me back to living life with you. I begged for our hospital life together. I begged for our Ryan House life together. I begged for anything but being where I was, on Saturday, as long as it involved being with you. I closed my eyes, wished for those things only to open them up and see that I was surrounded by the saddest faces I had ever seen in my life. The faces of 16 other me’s. I pinched myself, to make sure I was not dreaming. I felt the pinch and was taken slam bam right back into my reality. This cruel reality of being here without you. The reality that I would trade any day, for anything but this. I’ll never stop asking why this could not have been me. You deserved to be here so much more, than I do. What a cruel world we live in, that would take the life of you. You had so much to give. You were going to be so many things. I am trying really hard to carry on the beautiful life you would have lived by trying to make a difference in this world. It is so very hard, Ro. You would have done this, so effortlessly. You would have done it with one little wink from your blue eye. Your one little wink, would have changed the world.
After we all went around the room, we moved on to something else. I think we were supposed to be meditating about something. All I could do was pull my knees up to my chest, and cry. I couldn’t focus on anything else. Dr. Jo had been watching me closely since I had arrived. She came over to me and wrapped her arms around me. I told her I wanted to leave. She said she knew and continued to hold me and let me cry all over her. I think she held me for a good 20 minutes, while I went through an entire box of kleenex, snot, and tears. I really don’t remember much about anything else except I think the times I did talk, I said the word fuck a lot. I told the group about the name I had come up for my Grief. Inferno Fuckwad Bob. I think I got some laughs out of it. I truly did spend the entire 7 hours crying. It was painful but so very necessary. I have learned that I have become very good at distracting my grief. I needed to take that day and just cry about you, without stopping. I could have cared less if I was in a room, full of people I didn’t know. I knew they could relate to my pain. They all knew that I was only 5 months out of having had lost you. I was the newbie in the group. The one who had just lost their child, a very short time ago. They all remembered what it was like, being so new to all of this. They were gentle with me and didn’t expect anything. Many of them were surprised that I was even there at all, having all of this be so painful and fresh. Many of them said it took them years to deal with what I am trying to deal with. Which is my grief, I guess. I don’t even know if this is what I am doing as I seem to be stuck on a fucking merry-go-round that I cannot get off of. Round and Round and Round she goes, where ever she stops, nobody knows! Nobody does know. Not even myself at this point. I’ve always hated that fucking ride. And that song.
I met two mama’s in our group. Mama’s that both lost their kids to horrific car accidents. Mama’s who did not know each other, before losing their babies. Mama’s who now have a bond so deep and strong, it is as if they are twins. I didn’t talk to them much, except to learn that one of them had emailed me about wanting to do something for your Foundation. Very random that we both happened to be at this retreat. This mama, does a yearly Tea for her Ellie, who was killed by a drunk driver. She wanted to talk about how she had heard about your story and was wanting to hold the tea in your honor, this year. We exchanged phone numbers and hugs. I wanted to talk to these two mama’s more but I was so emotionally drained that I am surprised I was even able to peel myself up off of the floor and into my car to drive back to my hotel. Before I left, Dr. Jo asked if I wanted to do something with her later. I smiled and told her I would love that and I would call her after I got back to the hotel and rested for a bit. I somehow made it to my hotel, changed clothes and washed my face. I send Dr. Jo a text that said I was ready when she was. She offered to come and pick me up. I gladly accepted.
We went to her house to hang out. It is so perfectly her and I fell in love, instantly. She showed me her home office and her built-in bookshelf that I swear had thousands of books in it. I said to her, I’ll bet you’ve read all of these. She smiled that humble smile of hers and said she had. The brains inside of that woman’s head are something not of this world. Because it is not only her brains that she uses to think with, but her heart and soul as well. That is a very rare combination to find in a person in this day and age. We sat outside, underneath some twinkling lights, and the fresh Sedona air. My brain was pretty much fried but we talked for a couple of hours. About everything, but mostly you. About you and me. Me and you. Us. It was peaceful. I think I even laughed a couple of times. I never laugh anymore and it felt so nice. I don’t have any of my walls up whatsoever with Dr. Jo. There are only a few people in this world that I am able to be like this with anymore. She is one of them. She is the puller, not the pusher. She knows what to do with me, when nobody else, does. I trust that. I trust her. She trusts me. That right there, is everything to me. Plus, the fact that she is a super bad-ass, like the two of us, Ro. Brains, beauty, and badassness. That is a combo not to messed with. If not for her, I can guarantee you, I would not be functioning at all.
Dr. Jo dropped me off back at my hotel around 9:30. As I got out of her car I looked at her, smiled and said, “JoRo.” Her name and yours. A perfect fit like it was always meant to be. Like you have been leading me to her, this entire time. I left her car feeling more peaceful than I have since you left me. Even if the feeling, only lasted for a couple of hours, I was still so grateful. As soon as I got to the room, my head hit the pillow and I was out like a light. I did not even take my Ambien. In fact, I have not taken it in 3 nights. I’ve been able to sleep alright, without it. I have been dreaming, very vividly. I have been dreaming very vividly of everything except you. This makes me so very sad. I just want to see your face. I just want you to tell me you are all right. I just want to hear you tell me, you love me and miss me. You are visiting everyone, but me. Dr. Jo thinks it’s because I want to see you, so much that I cannot. I am fearful that I will never see you in my dreams, because I wish for this all the time. I would give anything to have you visit me. I know you know this. I think I am too caught up in this pain, to let my head clear enough for you to get to me. The pain that is only becoming worse, Ro. Everyday is harder and harder without you.
Sunday was our barefoot hike day. It was just me, Dr. Jo and a Daddy. We headed up the mountain, in silence. At one point, Dr. Jo and I stopped to wait for our other warrior Daddy friend and I whispered to her, that I never did things like this. Like hiking in silence. I told her that I always had my music blaring and loud. She told me it was much easier to be in chaos than calm. She is so spot on. It is so hard to be in the calm for me. Distractions everywhere. The louder the better. The busier the better. It takes courage to be in the calm. I have no idea, what it truly means to be courageous yet. I have a lot of work to do, little man. I have a lot to learn from Dr. Jo. I know you will help me. The barefoot hike was amazing. I felt nothing except for very connected to the earth and I was reminded of my capabilities as a human being. As your mama. I cried for you on that hike. I thought about how much you would have loved coming up that mountain, with me. The thought of not having you there, destroyed me. I looked for you anyway.
Ro baby. I wish I could write to you, for 2 more hours. I have so much left to tell you but I can hardly keep my eyes open. I’m going to have to finish the rest of this tomorrow. It is then that I will tell you the rest of my stories. About how much your brothers miss you. About how I sat and held Quinn as he sobbed for you last night. About how I sobbed with him and told him over and over how sorry I was. About Ellie’s mama. About my Fry’s Shopping experience today and how I was a mad woman crying all over that damn store and then had a “talk,” with the manager about the NO CHILDHOOD CANCER AWARENESS anywhere for September. She must have thought I was a lunatic. I don’t care. She gave me the phone number, to someone higher up than her. I’m on a freaking mission, baby.
I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.