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............

Floods are always bad

My night mares are getting worse. I know its been over a year since Saoirse died. The images of the night she died are still very fresh in my mind. My regrets are still very strong. I will work through all of this and I know things take time. Regrets will lesson as I continue to realize and know that there was nothing I could do to save my child. The images of her dying may take some more time. I do not sleep very well because of it. I know some people may say to just turn them off. I say to them that they never watched their child die. A violent death. I regret having them try to intubate her. She was dying and maybe I needed to let them sedate her and let her die in peace. Instead I watched a team of wonderful doctors and nurses try to intubate her so she could live longer and have a chance to heal and get better so we could try to get her into another protocol. I just wanted her to get well. She wanted to live. But at the end, she just kept signing to us "all done" all done".

My mind is constantly flooded with the last few hours of her life, in particular the last hour. Then after she died I would not leave her side. I did not want to leave the hospital. I felt like I was leaving her. I sometimes feel I failed as a father because she died. I know I did the best I could, I get that. Saying that doesn't take the pain away though. It will in time.

I am going to start seeing a therapist. I need to do something about my PTSD. I need to be able to focus on our business. It may not help that our business is focused on a couple of products that Kezia designed while Saoirse was sick. So pretty much all day I am looking at pictures of my daughter and marketing to hospitals. What keeps me going is how much we know our products help other people.

I am also trying to make sure I don't stress out Kezia. She is pregnant and I am stressed about her cancer coming back.

I just want her to come home.

It has been a rough couple of weeks. I am not sure if my system is preparing me for the upcoming months.

Tonight my nephew and Kezia and watching How I Met your Mother. It is the episode where Marshals dad dies and the story is focused on Marshals dad's last words. I had to go upstairs and eat. I just cant watch that episode for a while.

Saoirse's last words to me were "elmo". It was just the night before she died. I put on Elmo on the iPad so she could watch it. She saw the show come on and pointed and mumbled "elmo". She was so swollen she could barely talk. But she mustered up enough energy to say "elmo".

For the past few weeks that moment has been playing over and over in my head. I am trying hard to shake those last hours. I am trying hard to not think about her face, how swollen it was. I am trying hard not to think about all the noises in the ICU as they were doing CPR. I am trying not to think about seeing her little body thrust up and down as they were performing CPR. I just cant bear to her her moaning from pain just before the doctor verbally ordered more sedation.

Deep Breath....

I just want her to come home.

I cant sleep at night. I wake up about every hour. Much like I did when she was in the hospital. I wanted to stay up 24 hours in case she needed me. Its just what a father does for his child.

How does a father deal with the death of his child. How does a father deal with watching his child suffer? How does a father deal with watching his child die.

I have tried walking in the evening hoping it would tire me out enough. I think about happy times all the time hoping it will take away the nightmare images of my daughter dying.

Deep Breath...

I just want to sleep. I want some rest. I have to finish this business plan for our business and I am so stuck. Well, not really stuck because I just need to tighten up loose ends and wait for the quote from our manufacturer.

I am just exhausted. I do not want October to come. I do not want November to come. I do not want December to come.

I did everything I could. And then she died.

Deep breath.

I just want her to come home.

Ebb and Flow

All I have to say today is that I miss Saoirse. It comes in heavy waves sometimes. I have cried frequently over the past couple of days because I just can't get the day of her death out of my mind. That day comes in waves too. I miss he so much. Kezia is having a difficult time too. People who have lost their child to Neuroblastoma, or any other childhood cancer,  have told me this is normal. The ebb and flow of the emotions and thoughts. I just wish I could have held her and comforted her when she was dying. What did she see? Was she thinking about anything? Was she in any pain? No-one has these answers.

Yesterday I walked out into the back yard and noticed that her outdoor toys had grass all over them from when I cut the grass. For a split second I thought "I better hose those off so Saoirse can play on them". Then the brick wall hit me. These little moments, yet large hit me all of the time. They come so fast that it just hits me in the heart. This I am told is "normal" too.

Saoirse was so awesome.

Happy Birthday

Happy Birthday My sweet baby


Saoirse


Today you turned 2. Mommy and I are always thinking of you and you will be happy to know that I am going to cut the grass today on your "tractor" :) There are a lot of people who love you and are thinking of you today. We might have a fire tonight outside because you love fires. Oh.. and I am sure you already know this, but the garden is doing great.. we are going to grow some potatoes this year! We are also trying some new white pumpkins..


Fallon misses you. She guards your toys keeping them safe for your future brothers and sisters. Fallon loves it when Colin, Thomas and Eleanor come over because she knows that they are your friends. Fallon needs her baby fix. :)


We know you are here. We feel your presence in the house and your room and on the yard. I want you to know that I love you so much and I miss you even more.. I feel so privileged to have known you and learned from you. I carry you with me every day and there is not a moment that goes buy that I don't think about you and smile. You always smiled no matter what. You are such an inspiration to us and to thousands of other people though out the world. Yes.. people know you from all over the world. :)


Lets go cut the grass.


Happy Birthday


Love


Daddy

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.) 

Update on Saoirse

Hi All.  Saoirse has been very sick with a swollen liver for the past few weeks. Confirmed by an MIBG test today the neuroblastoma has attacked her liver. She was immediately planned for and started radiation to her liver this afternoon. She did not have to be sedated for the radiation or planning :) She is so swollen and sore that it must hurt to move a lot.. she gets very uncomfortable when touched or moved. Sometimes she wants to lay on her back, she either sleeps or watches tv. Most of the time she wants to lay on her stomach and knees. more her chest. It seems to relieve pressure from her liver being so swollen. This causes her organs to be squished a bit.. We have her on some good pain medication. We are hoping the radiation starts working immediately.. this will bring her some relief. She is also on medications to help release the excess fluids peeing them out. Her radiation oncologist thinks it should start working pretty fast, based on her last response to radiation to her skull, which was good. this is so stressful.. I hate seeing her in such discomfort and she wants to play, talk and have fun. it hurts me to watch this, and on top of her discomfort from a swollen liver, she is now dealing with side effects to radiation to the liver. nausea, vomiting and all kinds of internal issues such as retaining excess fluids, lack of adrenal glands and low platelets. She stays tough. She stairs at my eyes .. her eyes are scared and confused. deeply. then she focus on what ever is on tv. we are always playing her favorite shows. 

I can't imagine our life without her.

An unsure path

I have been bad about updating my blog. Maybe its the feelings that it brings up that I want to avoid. Or maybe it is because it puts the reality that my daughter may die in the front of my mind. No parent wants to thank about that. For me it is important to deal with my feelings and move forward so I can be there for Saoirse and Kezia.
I worry about Kezia a lot. I will never know, or pretend to know what the bond is between mother and child. I just see the pain, fear and worry in Kezia's eyes every day. Kezia is a great mother and all she wants to do is take care of Saoirse the best she can. I really admire her.
Saoirse had a CT scan done the other day after a high dose chemo called ICE and the doctors found new growth lesions in her skull. This means that the cancer is very aggressive and the doctors are now unsure of her next phase. Well, we think. No one has really talked to us since we received the results. We are suppose to leave for NYC tomorrow morning to have an mIBG scan done and another bone marrow biopsy, then start 3F8 antibody therapy and radiation in her abdomen and skull. This will be at Memorial Sloan-Kettering.  However Saoirse cultured positive for a bacterial infection in her blood so we were admitted to Children's Hospital Boston last night for IV antibiotics.
I just want my little girl to feel better and play like she loves doing. I cry a lot the past few days. It has hit my wife and I that Saoirse is very sick and could die. Or maybe we are just now willing to admit that fact. Neuroblastoma Stage 4 high risk is a very nasty and smart cancer. There has to be a way to help stabilize the cancer and we are hoping the doc have some answers for us today.