Thursday, March 1, 2012

Sleep when you can.

Just a short post today. Putting together the videos and working on some print / web ads for our website and Neuroblastoma awareness has had an emotional toll on me. It did help in ridding of some bad images and replacing them with great images of Saoirse. It felt good to see her in video and photos and felt good to have all the great memories flood my mind.  It also brought up a whole bunch of emotions for me. I miss her deeply. I rarely left her side and I have no regrets for that. I felt it was important for both of us to be in her life during her high dose chemo and treatment in general. I knew the prognosis and wanted to spend every moment I could with her.

Right now we are putting all of the information together for our new website as well as converting our Fund into a 501 non profit. Some other things we are doing is researching clinical trials for Less toxic and non toxic treatments for Neuroblastoma and Relapsed Neuroblastoma. In the Links section there are some sites of organizations we really like and they are doing some great work. We are also putting together a list of questions parents have the right to ask their doctor (s). There were definitely some gaps in her treatments, gaps in information we received and information we wish was offered to us when Saoirse was diagnosed as well as throughout her treatments. There is much more we are putting together, its just so time consuming especially when we are working on structuring our business. More to come on that soon. We just want to make sure we are spot on.

I miss my daughter.

I have got to do something to blow the lack of Childhood Cancer Awareness and Funding out of the water. Somethin is a brewin.. Stay tuned..

The following photo was taken in the Jimmy Fund in Boston, MA. Saoirse was in for a transfusion and she was so tired and didn't feel well. If I recall she didn't sleep much the night before.. She was so strong and courageous. I will be putting together another video in the series of "she loved" today or tomorrow. I want to share some playtime with Fallon.. One of the worlds most patient and tolerant Boxers.. She loved Fallon so much.


  1. Mike,
    you could consider sharing your story and the information you assembled on Cancer Today:

    This is a magazine by AACR to educate the general public about cancer research/treatment, and resources available. We've just discussed the need of having more coverage on pediatric cancers, so there will be more articles on this area.

  2. Thank you.. I will go check it out now.. :)

  3. You guys are doing a great job Mike. I am not sure how you guys do it but you make me want to be a stronger and better mother. I have leared a ton from your pages and blogs.

  4. What a wonderful Daddy little Saoirse has.