Did the past year actually happen?

Did this past year actually happen? 


As I sit in my office or in my chair in the living room, I ask myself "did the past year actually happen?", "did we really have a child with cancer?" 


I have been having some bad days. I am again being flooded by images of saoirse the day she died. The sounds actually and the image of her getting cpr. I am haunted by all of the doctor talk. I am haunted by the machine that made the loud beeping noise.......


It had been getting better, but I have times where it really floods me. I know I am not crazy, its just difficult. It sucks all of the wind out of me. What was she thinking about? did she feel any pain? did she hear me tell her I love her from across the room? Did we make the right decisions? 


Regret..


Not bringing her home so she could die at home. 


Deep breath




I have been crying for a week actually. I feel such a deep sense of loss. Saoirse's birthday is tomorrow. We are having a Celebration Party for her on June 9th. Saoirse loved life and she loved parties. She loved being around her friends and playing. All of her friends are having birthday parties right now.. Thats the other thing.. we are invited to the parties and we go. Kezia's mom's group are wonderful and have stuck by our sides through and through. We love them all. We bring saoirse's Elmo doll with Curious Georges shirt on.. Saoirse's presence is always there. 

Kezia is also launching the Fitzgerald Cancer Fund by flooding the plaza of the Today Show on June 18th with large poster sized pictures of NB kids. Helping to organize this has been tolling on the both of us.. Its overwhelming actually because there are so many factors in putting it together. We still need to have the posters printed and find a place that is not expensive. The other challenge has been getting people to come down and help hold posters because we have to get there early.. Like super early to ensure the prime location. It is a monday so its difficult i realize. But we will make it work. 


I will write more later.. Also, I will write about our trip to Austin, TX later. This was significant for me because I got to speak with other parents - In particular other dads. 

Bad Day

I am having a bad day already.

NMTRC Symposium, liberation and anger.

We attended the NMTRC Symposium 2012 last week. It is important to us to fundraise for non toxic, less toxic and "out of the box" thinking. We are very involved in the research, we have to be. The reality is, the "standard" way of treatment is not working - it hasn't really changed in 40ish years. Kids should not be getting chemo. I am open to nano technology, which was discussed extensively during this conference, where scientist are getting some amazing results in delivering the right chemo to the cancer cells, virtually leaving the healthy cells alone. This makes it less toxic and can give a better quality of life for the kids. 

I have a lot to write about and will. I want to say that the meeting was bitter sweet. It was awesome listening to all of the doctors, scientist and other key figures in curing Neuroblastoma. My highlight was meeting other Neuroblastoma parents. I need that connection. I need to know I am not crazy. I have good news.. I am not crazy. I miss my daughter deeply. The pain, the loss is completely unexplainable that only a parent who went through a child die of cancer, or who has cancer can understand. 

Meeting all of the Doctors and Scientist was also liberating. I felt complete passion from all of them. I got the impression that this is not just a "job" for them. This is a life's passion. They truly want to help. They all agreed that their research was missing an element though.. The parents.  Meeting us for them was moving they said. It brings another element to the research, the motivation. The deep sleepless nights they have when they are seeing encouraging results in lab mice and rats. They are on the verge of a cure. I feel it. I wish that Childrens Hospital Boston was more about "thinking out of the box". I found myself really beating myself up a lot during this conference. Wishing I had taken her out of that hospital and put her in another trial. I am so upset with all of the doctors who still actually believe that the strong chemo works. Sorry, but stats are stats. Survival rates are actually on the mild decline for Neuroblastoma and still a death sentence for relapse/recurrent Neuroblastoma. And stupid politicians who only do what the doctors say. The childhood cancer arena is absolute chaos. There are wonderful and encouraging trials that are showing results but parents do not have a lot of that available to them. Our doctors were very closed mouthed about other trials. We had to do all of the research and decipher the clinical trial information the government provides. Dell is working on a "cloud" for an all encompassing information cloud for doctors, scientist, and parents. Each having their own portal. This will be huge for terrified parents who's child was just diagnosed. We will participate in the development of the Parent portal, along with other parents. This cloud will enable parents to easily find clinical trials to participate in. It will also allow clinical trials to find potential patients. We were those terrified parents. I can't tell you the sleepless nights we had (and still do) researching trials and a better quality of life for Saoirse. Chemo kills children. Its as simple as that. Now, some kids survive, but almost all have health issues of some kind as they grow up.

I am motivated by my daughter Saoirse. I am motivated by the pain. I am motivated by the love others have for Saoirse and our family. 

More to come. (P.S. - if you are in the greater NYC area and want to come show your support, visit fitzgeraldcancerfund.org for the launch event on the Plaza of The Today Show where we flood the plaza with posters of kids of NB.) 

NYC Today Show Plaza

We are excited to launch our foundation by flooding the plaza of The Today Show on June 18th 2012 with pictures of Neuroblastoma kids to bring more awareness to the world. When I originally posted my idea a few months ago, someone emailed me and said the company they work for can do some of the large poster sized prints we need.. I can not find your email. If you read this please email us at fitzgeraldcancerfund@gmail.com  For more information on what we are doing please visit the Facebook event page:  http://www.facebook.com/events/221552697963446/


Or you can just visit our webpage  fitzgeraldcancerfund.org 


Thank you

Emily Hubbel: Update of Week

Emily Hubbel: Update of Week


Check out her blog.. what an incredibly strong person

Technology with Passion

Childhood cancer research computing cluster to support precision medicine clinical trial

Published on May 19, 2012 at 12:54 AM


http://www.news-medical.net/news/20120519/Childhood-cancer-research-computing-cluster-to-support-precision-medicine-clinical-trial.aspx

NMTRC Symposium 2012

Currently at the NMTRC Symposium 2012.. wow, what a lot of information relating to Neuroblastoma. I will write more detail later, but there are some great things happening in the treatment of Neuroblastoma..

Mothers day.. Please read Kezia's blog.

http://www.newmomnewcancer.blogspot.com/

No mother should have to deal with this

I think the best I can do is just be there for her. Not be overly hovering her, give space and lots of hugs.

Saoirse was diagnosed on Mothers day of 2011. So Kezia has a double pain. On top of that, Kezia was battling her own cancer and going through Chemo. I have been trying to place myself in her shoes to get her through this. I also have to make sure I am ok. I have been having dreams lately about Saoirse.. She is crying for me. I can't get to her. Then I wake up. For just a second, I think its just a dream and I listen for her in her room. Then it hits me.

Deep breath.

How?

How am I going to help my wife this mothers day. I feel so helpless.

deep breath

Kezia couldn't have said it better today:

"I just want her to come home".


Deep breath.

1 Year Diagnosis

Yesterday was 1 year since Saoirse's diagnosis. We are sad.


Deep breath.

I really miss Saoirse today. I just miss her. I also have the most wonderful partner in life. Kezia is such an amazing person.

I finally found the hair color I was looking for.. its a plant based semi-perminant hair color called Special Effects out of Europe. So I decided that for the month of May I will have purple hair with Orange tips and highlights as well as Orange Chin Hair.. Why not its getting shaved off on June 3rd at Gillette stadium to help raise money for childhood cancer at Childrens Hospital Boston..

Finally going purple to represent Neuroblastoma and Childhood Cancer in General. Orange because I love orange and so did Saoirse. :)

Please help sponsor me on June 3rd...

Visit

http://www.firstgiving.com/fundraiser/mikefitzgerald/kidscancerbuzz-off

Click Donate! Thank you :)

I am getting ready to Dye my hair Purple with Orange tips in to represent Neuroblastoma and Saoirse. Now when people ask why my hair is Purple, or give me weird looks (just wait til I'm in my Utilikilt with colored hair :)) They will have to visit our funds website or Facebook page to find out :) I am going to dye it tonight or tomorrow - actually, the entire team we have set up to have our heads buzzed is dying their hair - Read below 

I have a small request to all who view www.myfamilyhascancerx2.blogspot.com

  newmomnewcancer.blogspot.com and follow fitzgeraldcancerfund Facebook page. 

I have a team set up to go shave their heads at Gillette Stadium on June 3rd, 2012 in honor of Saoirse to help raise money for Childhood Cancer at Children's Hospital Boston. As most of you know, Saoirse was treated at Children's Hospital Boston. 

I need all of you to please pass this along --- We need more sponsors for Saoirse's team -- "Team Saoirse". Please tell all of your friends and please share this with everyone you know. This is a very important cause and will help raise a much needed awareness for childhood cancer. 

Here is the link -

 http://www.firstgiving.com/fundraiser/mikefitzgerald/kidscancerbuzz-off

Thank you :)