Twas night before christmas

Writing is difficult, Kezia wrote a poem that says it all. I wish Saoirse was home with us. Please check out Kezia's blog.


http://www.newmomnewcancer.blogspot.com/2012/12/twas-night-before-christmas.html

A Smiling Earth and New Traditions

Having a rough Saoirse day. This time last year I was waiting for my daughter to be cremated. I feel for all of those parents in CT.

On the 13th, the anniversary of Saoirse's death, we decided to make some new traditions. We started with waking up crying. I didn't sleep very well and neither did Kezia. All of the moments of exactly one year prior were flooding my mind and I couldn't shake them.

We decided to go put the solar lights on the dedicated tree for Saoirse at Endicott Park. We walked with Fallon, its not too far from our house. It was a beautiful day, very sunny. Its felt as if the earth was smiling. We definitely felt Saoirse's presence with us. We walked back home and I put up lights on the house. I was actually excited about doing that. For the past year, I have been dreading the holidays. Just dreading them. I was against the tree and didn't want to put the lights on the house. However, the closer to the holidays it got, the more I allowed myself to feel for the holidays and get excited for the tree and the lights. It is extremely difficult. But I decided a log time ago that I am choosing to stand up and do positive things and make something good out of a sad tragedy. Kezia's family came over that night and we decorated our tree. So overall, it was a good day. It just sent a ping of emotions through me just to say that. Its just still so raw.

Deep breath

Here are a few pictures and a video

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. 

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.) 

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. :)

www.myfamilyhascancerx2.blogspot.com

Individual.

I need to take all of the video and photos off of my phone today. My phone is full. I have been avoiding this for a couple of weeks. I have a hard time watching videos of Saoirse. but i feel i need to.

at night when I walk upstairs I still start off tippy toeing up because I don't want to disturb Saoirse. About half way up, sometimes a quarter way up reality sets in. It turns into a complete surreal situation. My life seems as if it is a complete surreal situation. I keep waiting for a dream to be over and I will wake up and hear Saoirse playing downstairs. But that is not going to happen. I will only hear her in my imagination and heart. I hear her voice every day. I see her smile every day. I see her "george" expression every day. I hear her laugh every day.

I am comforted when I talk with other dads who lost a child to this nasty disease Neuroblastoma. there is a bond like no other. and the only ones who know what this feels like are other dads like me. and even then it goes deeper because its just so individual. it helps though. its not the same as talking with my wife or other friends.

Kezia and I are dealing with this in our own individual ways and that is ok. we support each other very well.  We also respect each other knowing that we each have our own way of dealing and grieving. Kezia has a lot of support and spends a lot of time with her friends in the Mom's group. they are all so awesome.

i have a lot more to write about. I just feel that today I need to write. a lot. i miss her so much and want to hold her.

deep breath