The Raw reality. There is no easy way to say this.... So I will just say it.

I want to thank those who wrote response comments to my post the other day. It helps. It helps a lot. Sometimes just knowing that someone is listening, or reading in this case really help a great deal. I can really feel the love and positive thoughts and I look forward to many more comments.

I want all of you to know that I appreciate you.

I think it is important to note that my experiences and my PTSD are unique to me. However, I do want to mention that life after the death of a child to pediatric cancer is still very much a part of pediatric cancer.  It is a reality.  It does not go away when your child dies. Its not just fighting for a diagnosis, getting a diagnosis, chemotherapy, radiation and surgery and countless hours crying and countless hours of emergency calls to the doctor and drives to the ER as well as countless hours of hospital stays and staying awake making sure your child is doing ok. Oh, did I mention the countless hours worrying where money is going to come from to pay for gas, food and a mortgage. (over 60% of families diagnosed with pediatric cancer file bankruptcy) There are so many facets to this that only a parent/caregiver of a child with pediatric cancer can know them all.  You can not pretend to know.

The reason I post is to vent my own feelings and it helps me process. My other motive is to work on documenting what happens after. I hope to draw out other fathers who have lost a child to pediatric cancer and to make the grieving process and struggles aware to the public.

My daughter was killed by cancer, she was an infant. 18 Months old. Full of life and such a great large personality. She was a person. A wonderful person who cared for others, loved sharing and loved her parents and sometimes more importantly, her faithful Grape Ape and loyal puppy Fallon. Life for me after her death is still very much a part of how pediatric cancer effects parents and families. The grieving process is raw. Very raw. In my opinion, one can not grieve without being raw at some point. I cry a lot. I am not sure when, if ever that will go away. It may lesson. I just do not know right now and I am the only one who will determine that. I will not move on at anyone else's pace. I will move on at my pace.

I am a bit unique though. I was the caregiver to both Kezia and Saoirse. I almost lost my entire family to cancer. Hodgkins Lymphoma (Kezia's Cancer) is relatively easy to treat - however it does kill people.  When she was diagnosed it scared the shit out of me. That still haunts me and I still worry about Kezia's cancer coming back. I could not work and we almost lost our home - which I would have gladly lost to make sure my family had medical treatment and a car to get back and fourth. We had a lot of help and for that I am forever grateful. That is another post though. Soon.

Sometimes people do not like to hear the raw truth about what families go through when their child is diagnosed with cancer. I am not talking about an adult child ( I am not comfortable commenting on that because I do not have an adult child). Sometimes I think that the media really paints a different picture to try to spare the feelings of the general public. Actually, not sometimes. Most of the time. Yes there are a lot of kids who survive. Unfortunately, in the case of my child and most others, her cancer has a very low survival rate. That is a reality. Not an emotional reaction. The public needs to know the horrors of pediatric cancer. All of the horrors. The public needs to know the raw data described by a father who lost his daughter. I wish my story stopped on December 13 2011. I wished she was deemed NED (No Evidence of Disease) for more that 3 weeks. 3 weeks is about how long it took for her cancer to aggressively come back. The reality is, it did not stop. So I will write and continue to give the general public the raw data. It will make a difference.

The images and sounds I describe are very real. These are things most parents may see and hear when their child dies of pediatric cancer. It is a horrible death and the most helpless feeling one can possibly feel. Watching my child die was the most horrific scene I have ever experienced.

I can describe it as violent actually.

I can not say it was majestic. It was NOT meant to be. She was meant to grow up happy, live a life, make friends, do her own thing, maybe travel the world. She is not in a better place. A better place is sitting here with us, playing with Fallon and her toys, learning how to read, speak Gaelic and Spanish, going to Ireland and playing in her yard.

I describe reality.

I needed people to know this. I want people to know that there is no easy way to move through this. There is no special book or special saying that will magically make me just "move on". I will move on, and in many ways I have. I need to be there for Kezia - she is so wonderful and awesome. I need to be there for me. I need to be there for my life and my family. Writing helps this.

I want to thank everyone who reads this. I ask that you please share my blog when I post. Sometimes it may seem like rambling - but to the parent who has a child with pediatric cancer or who lost a child to pediatric cancer, my blog is not rambling, it is a harsh reality - something familiar.

It will get better.


Deep Breath............

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

quiet

When I walk into the house I still expect to hear her laugh.
When I walk into the living room I still expect to see her playing or tormenting Fallon.
Its so quiet in the house.


Deep Breaths.

Fathers Day

Its Fathers day weekend.

Deep Breath.

It took every bit of energy and positive self talk motivation to get myself out of bed for the past few days.

Today was worse. I just didn't want to get out of bed. I wanted to stay asleep.


I miss Saoirse so much.


Deep Breath.

Fathers Day, Tradition, Foundation, Business and No we are not Crazy

I want to thank you for all your love, support and positive encouragement. You are all wonderful. Saoirse had a lovely birthday.


Its funny how my daughter is still teaching me about being a person. Saoirse had so much patience with people. (for the most part..) I wish it was 5 years from now so the pain is lower. This is how I feel sometimes. Its been a tough past few weeks. Fathers day is coming up and I am already having feelings about that. Last year on Fathers day Kezia and I took Saoirse to play Put Put (miniature golf to some :) ). Craig and Kristina, as well as Tabitha and Scott were there too. Saoirse was feeling pretty good that day and was having a good time riding on my back on the back pack. I knew she wanted to just get down and run around.. lol.. but she still enjoyed herself. She was very vocal that day.. just talking to everyone :) She loved being with people and people loved being with her. 

I saw this early evening out as the beginning of a yearly tradition to play PutPut on Fathers day. I feel sad because I want her home so we can go play. I have thought about going and keeping the tradition in honor of Saoirse. My body tensed up when I had that thought so I am thinking I am open to it, but just not this year. That made me think of the Fitzgerald Cancer Fund's launch on June 18th. in NYC. This is the day after Fathers day this year. That won. This year fathers day is about Saoirse and Neuroblastoma. Now, I have very little, if any to do with the foundation. Kezia and the board run the show. I want to give a very big hug and shout out to Kezia and all of the board members.


Kezia and the entire board of directors of The Fitzgerald Cancer Fund, Inc (we found a free non profit lawyer service to help file the paperwork for non profit public charity - we have to attend a seminar on non profit start ups which we are really looking forward to attending) have been working tirelessly to organize the foundation and plan our official launch in NYC. I mean hours of nightly board meetings, days and days full of planning and designing and hours and hours of designing media. Planning a launch like this is not as simple as saying "think we will go to new york and launch the foundation" .. there are a lot of details and legal requirements that needed to be fulfilled such as photo releases. We thought at first that maybe we are putting to much into this. But no. We are not. This foundation is a commitment. Kezia and I committed to Saoirse and a lot of other parents that we will do what we can to help. This is a lifetime commitment. Board members are all committed. They are so wonderful.


The purpose of the launch at the Today Show Plaza (which I want to add that we are not invited guests on the show, we are just flooding the plaza) is to officially launch our foundation and bring a heightened and much needed awareness to Neuroblastoma, the deadliest and one of the hardest to treat and cure Child Cancer. 


I have my own project. We still have to eat, pay a mortgage, car payment, heat, etc.. We are starting up a business and so we have a lot going on.. I write all day. We have a manufacturer now that we really like and we are in the final stages of samples before production. We are both pretty busy, and that feels good. Its not easy. I have to have a lot of patience with myself as well as with others. Some days I don't write. I just garden or clean. Sometimes we watch a movie. We have our bad days. Sometimes bad days-in-a-row. Thats ok though, so I am told. Sometimes I have to force myself to get up. So I do because we have to. I have no choice but to get up and work for my self, for my family and for my sanity. I got to talk with other parents who lost their child to Neuroblastoma a few weeks ago. I needed that because I just had to make sure I am not crazy. I am not. They are not. We watched our child die.


With all of our busyness, we still make a point to do stuff non business non foundation related such as art walks, a drive, gardening, a movie, or just a walk around Salem or Neurburyport. The best thing is all of that stuff is free :) 


Deep Breath. This felt good. I needed to just sit and write in this blog. 


** To all dads out there.. you are not crazy. We are not crazy. Take deep breaths often. 

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. 

Anxiety and Sadness

Through out the day my anxiety keeps progressing. I have horrible anxiety sometimes.  I am full of emotions and sometimes I just take a walk outside and cry and get some fresh air. I do projects, I read ... yet I am so bored. I want to be hanging out and playing with Saoirse. I also have a difficult time getting that morning out of my mind. Sometimes when I wake up and start my day I feel I will have a good day.. then I don't. Sometimes it starts out bad, then turns ok. I just can't believe how profound, raw and deep my feelings are running. I went out and hummed Saoirse's lullaby to her. I do this every night.

I am just in a deep sadness and I wish I could hold her just one last time. I am just trying so hard to stomp forward one foot at a time. I will.

serious business

I never got to my phone. I was scared to do it. i think i will work on moving all the video and photos tomorrow. thats a better plan. this has been a stressful day for me. Very emotional i guess. i had a great conversation with another dad who lost his son to Neuroblastoma. its been a few years for him so his prospective is what i was looking for. it helped. a lot actually. it always does. i just have felt so sad and lost today, well actually the past couple. its been 3 weeks and I can not believe it. we did manage to get some things done today. errands. bills. insurance paperwork. all done and satisfied. feels good. we do realize that things keep going and we have to keep up. I took Saoirse off our insurance yesterday. that was hard. it was something concrete.

deep breath.

my mom is doing better. she runs out of energy real fast because her heart isn't functioning up to par. i am worried about her. and my dad for that matter. she is having a defibrillator put in at the end of the month.
i am glad they got to come up and spend time with Saoirse before she passed. it was a good visit.

I did more work on refining my business plan today for the business we are starting. Its fun for me working it out and writing it. right now i am focusing on the marketing strategy. i can only go so far until i get the quote for the initial product launch, which we think we have an investor which will enable us to launch the company and draw in some more investors. but i need that quote first. working on it.  its a great product (s) that Kezia developed and i can't wait to tell everyone about them. Soon. i need to get back to work and it feels good developing this. it also feels good working on ideas for the foundation.

the 18 months of saoirse's life seems like years. its so weird that our life was so full.. busy and eventful. before Saoirse got sick it was busy taking her fun places, teaching her, watching her learn and grow and taking care of Kezia who had been sick already for 4 months. we kept pretty busy.

our life stopped abruptly. it was like poof. gone. it wasn't like when a you power down a boat fully that is going fast. it slows quickly and the back of the boat kinda sinks, the bow rises and eventually you float to a stop. this was like when you forget to untie the boat from the dock.

Saoirse taught me a lot of things. perseverance is one of the top on the list. She always found a way to make it through the tough times. she would always find something to smile at. she was so full of life. and she just kept moving forward as much as she could. No matter how much resistance i get, how difficult things can get starting the business, or dealing with some of the negative non supportive people in our lives.. i will keep moving forward. No more "what if's", no more "I wish i could do that". people choose not to take risks because of their own fears and negativity. mostly negativity because fear can be a great motivator. but there has to come a time when you have to embrace that fear and combat those negative tapes with positive reenforcement and you say "sure its scary, but i have to find a way to make it work and go for it". well, we have reached that point in our lives. 


I miss holding her. every night i go outside and hum to her. I vision myself holding her, rocking her and humming to her. my chest feels warm when i do this. it feels so good to imagine that. feeling her heart beat, feeling her breathing as i hold her. making sure she is comfortable and safe. warm. 


deep breath. 


more tomorrow. 

I miss my daughter

I miss my daughter today. Badly. I am forcing myself to do things productive. I just feel so helpless and sad.