Tuesday, February 21, 2012

She loves, She continues to live.

I am going to try something new on my posts. I am going to highlight old post titled "she loves" and I am going to take each thing she loved and write a story about it. Each day a new story. I am doing this for a couple of different reasons. I need to really focus on good memories. The most prominent images I have right now are pretty traumatic of her last hour alive. I am finding that day and that moment and images hard to shake. I think it is keeping a part of me from moving forward. I also think its important to tell these stories to help bring awareness to Neuroblastoma as well as how it effects families, but most of all how it effects children. Most people just do not know because they look away and/or force themselves not to think about it. I believe this is one of the main reasons there is little awareness and funding for childhood cancer. Its difficult enough to see an adult fighting cancer (been there, my wife battled cancer at the same time as our daughter), but seeing a child fight cancer is almost unbearable.

I know I keep writing about this subject, but what else can it be? Is it because the general population of the world just doesn't care about children who are fighting cancer? No.. I don't think so. I think its more about emotions. A good way to avoid the emotions of seeing a child fighting cancer is to look away and think, "people are doing something about it, there are organizations who are helping". Well, this is correct. Unfortunately most of the large corporate "non-profit" organizations use children to advertise to get donations, however give very little to help childhood cancer. (we have done the research and know the reality and if you have read my blog for a while you know who they are). There are some great organizations that do raise money strictly for childhood cancer research and family assistance. They give all of the money to critical clinical trials, research and program funding and take extremely low salaries and in some cases no salaries.  Unfortunately the larger organizations overshadow this assistance by taking the money raised and giving most of it to adult cancer research or large paychecks. Yes it happens.

In my opinion, the only way this is going to change is to tap social media, conventional media, partnering with existing organizations and be persistent, consistent and to refuse to back down. We all have to stand up and just do it. Children and families can not wait any longer. I do this for Saoirse. I do this for my family. Most importantly I do this for all the children and families who have suffered, currently suffering and who will suffer from childhood cancers. I do this because there is no reason not to. There is no reason that we can not start a grass roots movement to bring an every day awareness to childhood cancer. (runs, walks, dance-a-thons, dads and moms getting together and walking across the US to go see Ellen :), art shows, media appearances, etc.. ) I have a ton of ideas. Most of which wonderful people are doing all over the country and world with their own organizations. This will bring more awareness, more funding and eventually bring a cure. Blowing this out of the water has to start somewhere. Why not here? We have a lot of great supporters and a lot of great people who are working hard to help. Thank you.

Now, tomorrow or maybe tonight I will start my stories of Saoirse of all the things she loved. I have plenty. :)

Please just take a moment and follow my blog as well as share it with others. Lets get it started. :)



  1. Wonderful ideas! I am looking forward to reading the follow-up posts to "She Loves." I hope they push back the harder memories - and I think you're very accurate in calling them traumatic memories. And I also just like hearing stories about Saoirse. :)

    With the grassroots idea, I am all in! Let's do this and partner with other organizations who have the same goals! :)

    With lots of love to you and Kezia!

  2. How do you feel about St. Judes? I've donated to them several times, but are they one of the large organizations that don't use the money for child cancers?

    I have a daughter born June 2010 and she does this one wide mouth, wided eye look that reminds me so much of one of the pictures you posted of Saoirse. I think of you all every day!

  3. I agree with what you are saying. And, we all are interested in helping out as well.

  4. I am so grateful to the many families that set funds up in memory of their children at the Floating Hospital. Because of one family we never had to pay for our parking! (and for those that don't know, parking is NOT free at Boston Hospitals -and it can add up very quickly! Thanks to another family, we were given vouchers for food at the hospital as well as DD gift certificates. Research money is well needed, but funds that directly effect the families are so awesome! The "cost" of Childhood cancer goes far beyond medical expenses!

  5. there are large organizations that spend all/most of their money raised on children's cancers, St. Jude is one of them, Jimmy Fund is another, Stand Up to Cancer also funds some great work on this. There are some projects that simply cannot be done without large organizations simply because they cost too much money and need the expertise of many people. For example the Pediatric Cancer Genome Project (http://www.pediatriccancergenomeproject.org) that's underway and completely funded by private donations to St. Jude is one example. It already has many very exciting new discoveries and more to come and they specifically decided to focus on hard-to-cure pediatric tumors like high risk neuroblastoma.
    I know you don't like ACS, but ACS is not a main cancer research funding organization and they do not have any particular cancer focus. They mainly give out fellowships and scholar awards to young scientists/doctors, regardless of what their research focus is, and you do need people, good people, in research in order to make progress. So, things are not as black and white as they may seem from the outside. I've done many fundraisers for different organizations (running, walking, biking/spinning) and also donated money myself, and yes, seeing kids with cancer make everyone wanting to do more. Charity star rating is a good way to see which one spends the money wisely. But, you can even just visit places and talk to people who work there to get an idea what they do and how. Some funding agencies also want patient advocates on their boards and review panels, so this is another option. Many many ways you can feel that you are working for kids with cancer and helping them.

    1. Thank you for your post. We will start small (just like all other organizations) and then we will become large. ☺ I also like your ideas about getting on some boards and focus groups about parent advocacy. Your correct, there are a lot of ways that we can help. We will be big though. Sounds like you can help and have some great experiences with fundraisers and some great insights into the cancer community as a whole. If you want, please email me and maybe I can bounce some ideas off of you?

      Now.. we apparently have some different views on the ACS and for maybe different reasons. That’s ok. Lets leave it at that.

      I am making good on a promise I have been making to Saoirse since the day she was diagnosed. I promised her I would do what ever I can to help find a cure for Neuroblastoma. I re-promised her 1 hour before she passed. This, I will never back down from.

      Currently we are supporting the following:



      The website www.beatnb.org focuses solely on raising money for Neuroblastoma and relapsed/refractory Neuroblastoma for the vai.org organization. There is some great information

    2. These organizations you're supporting do look good as they focus on developing new treatments, which are very much in need. But, for the development of new treatments require the understanding of what makes these tumors grow. the St. Jude genome project hopefully will answer some of these questions, but based on the findings so far, it looks like that pediatric cancers may be very different from adult ones and there may not be many mutant genes that can be targeted, which will make it more difficult to develop tumor-specific drugs, but not impossible. I do work in cancer research, and have been for the past 20 years. Not directly in pediatric tumors, although some of my past work on cell cycle inhibitors (p27, described in the articles featured on the Vermont website) relates to them.
      reading about your story and seeing what these poor kids and their parents really go through from a very personal point made me read more and wanting to do more about pediatric cancers in general, but particularly neuroblastoma as it looks like a really bad tumor that's very poorly treated. It also made me realize that my baby half-sister who I never even met as she died as a few months old baby, most likely died of neuroblastoma as well (all I know that she had an abdominal tumor). Looks like not much changed in the past ~35 years, which is sad, and working in cancer research particularly makes me feel frustrated why this has not changed. but, I'm also optimistic that the new tools we have, will make a difference and there will be new and better drugs for many cancer types.
      I have participated in many fund raisers, mostly for the Jimmy Fund and various other pediatric, breast and other cancer foundations. I know people who work for these fundraising organizations. I have not started a foundation myself, but I have friends, who did, and I also know many cancer researchers in the US. Many of us trained together and decided to focus on different tumor types, so that we can combine what we learn and apply to different diseases, and we are all 100% devoted to improving clinical care and treatment (or even better, prevent cancer if we can).
      It is impossible not wanting to do something after going through the incredibly painful experience of loosing a child to cancer and I'm sure you will succeed with keeping your promise. I'm happy to help with what I can.

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  7. Mike have you heard about the Kony project/Invisible Children? It doesn't have anything to do with Pediatric Cancer however I saw it and I thought this is what we've got to do about With raising awareness for Pediatric Cancer. Basically rallying millions of people to raise awareness!!!! They used youtube.com and Facebook as a voice and it went viral so quickly!!! We just need a film maker that can put some things together and narration. I think you should take a look at it.

    KONY 2012 is a film and campaign by Invisible Children that aims to make Joseph Kony famous, not to celebrate him, but to raise support for his arrest and set a precedent for international justice.

    If they can do it for international justice and Uganda then we can do it for Pediatric Cancer.

    By the way I was brought to you by Crazy Fighting for Kids Cancer/Audra. I have been following your story for the past 2 months.