A Fathers wish and frustration.

Ok. I am sure there are not many people reading my blog anymore - thats ok because I haven't published my writing much. I do write, just don't publish much.

I need to publish this though. I saw how there is state police in another state selling t-shirts and raising money for the boston one fund. I get that the families need help. Seems there will be and is plenty of help.

What gets me is there were a lot of stars who showed up for special concerts to raise money, extra media coverage and people keep pouring money into the fund.

While I have understanding and sympathy for the families who lost family members and who were hurt with life altering injuries, I get frustrated because all of the pediatric cancers are getting whitewashed again.  I watched my own child die a very violent death - I see her death every morning at 630 am.

What I wish - A fathers wish - is that some stars would come together and have a special concert for Neuroblasotma - a pediatric caner that kills a lot of kids each year.  Not sponsored by any of the conventional cancer groups because contrary to popular belief they do little for Neuroblastoma or any pediatric cancer for that matter. We need someone to help us raise a lot of money to help kids with cancer. I challenge stars to actually do their own research and do this because its the right thing to do.

Right now Kezia is planning a dance a thon - More details to come soon. She is doing her part, working hard and doing all the work to organize a fundraiser. She could use some big stars to help raise attention and a lot of money for the trial (to be announced on her website this week) they will be funding.

fitzgeraldcancerfund.org

It is a 501 charity and we make NO PERSONAL MONEY from the foundation.

Its the not-for-profit scientist and pharmaceuticals who are working on cutting edge treatments - including NON TOXIC and LESS TOXIC treatments. The government forces you to make your child take Chemo - for Neuroblastoma that is more times than not very deadly.

As a parent - I am frustrated because I hear every day of families struggling, kids in pain and getting sicker and chemo keeps getting pumped into them. No way a child's body can keep up with the poison. The chemo kills the immune system and has no way or encouragement to come back.

Everyone has heard of Breast cancer, colon cancer, pancreatic cancer, lung cancer -

Have you heard of Neuroblasoma? If not, look it up. Pass the word along. Share and help with awareness. What is it going to take to start getting people to pay attention?

Do I need to dress myself in orange and walk across the US?

Come on people.

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

Some details of the flood

So some people are curious about what I am being haunted by every second of the day.

Saoirse having a hard time breathing
Seing her tears turn white as soon as they exited her eyes
Seeing white salt lines coming from her eyes to ears
Seeing her swollen tung extremely dry because she couldn't have fluids
Saoirse signing "all done"
Saoirse being curious about in IV line clip about 2 hours before she died - she didn't want to die
Saoirse saying "elmo" the last thing I heard my child say
Saoirse's legs and feet swollen so much I thought she was going to pop
Hearing her moan in pain as the "team" was moving her to try and stabilize her so they could intubate her
Hearing the doctor order "more sedation"
Hearing the monitor beep
Watching the entire process - I am haunted by the entire process like its in slow motion
Watching the doctor stick a long needle in Saoirse's chest and hearing air come out
Watching them adjust her head so they could intubate her
Watching them struggle to intubate her - Saoirse was fighting them
Watching the eyes of the lead doctor directing the team - sad eyes
Hearing her crashing and hearing the "code" come over the intercom
Hearing the lead doctor order "cpr"
Seeing them perform CPR on Saoirse
Seeing her body flop around as they were performing CPR



Deep breath

Hearing my wife cry as I held her. 
Hearing the deep unexplainable cry come from her as the doctor came over and sat next to us
Hearing the doctor say "we are fighting a battle we can not win"
Hearing myself say "stop CPR"


Deep breath....

Telling the doctor to make sure she is cleaned up because I didn't want her mother to see what I saw
Seeing my daughter lay there motionless and pail. Needle holes in her chest
Seeing her front tooth chipped - probably from the intubation
Standing there wishing she would start breathing again
Seeing her eyes swollen
Seeing dark liquid come out of her nose
Watching my wife look at our daughter laying there


Deep breath....

There is much much more. This is just a portion of what haunts me every day. I will write again later.

A father is just not suppose to see these things happen. Period. 

There are a thousand good memories I play over and over. It helps, however does not alleviate the pain and memories.

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.

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

Colorful Lights and an anniversary

How do I prepare myself for the 1 year anniversary of my daughters death?

First of all, I have to allow myself to look forward to christmas. Meaning - decorations.
Most of the past year I have maintained I will not decorate, turn on the colorful lights on the house or put up a tree. I thought it would just be to difficult. But after much consideration, talking with Kezia about it and reading others' posts from the past I think it would be a great idea to put up a tree. Saoirse would have loved it. Plus I strongly feel her presence in the house, so I think her spirit will be sad if we don't decorate. She loved the colorful lights. I also feel that by not decorating I will be avoiding feelings that I need to embrace.

I miss her so much. Thanksgiving was tough, it was the last major "first" holiday without her. She died right before christmas last year so christmas was the first major holiday without her. But last year, right about this time of year Saoirse started getting really sick. Life was a blur for me. My entire focus was Saoirse and getting her well and dealing with strong conflicting feelings that I knew in the depths of my soul that she was dying. I don't really remember christmas last year.

Kezia and I have been talking lately about what we are going to do for the anniversary. We just don't know. Maybe let off a couple of lanterns? Go to dinner somewhere? Go somewhere special and spread some of her ashes?

See, our feelings don't go away until the 13th every month. The 13th is everyday for us.

I talk to her every day, as if I am telling her a story about our life. It is a weird thing. Its like we are sitting on the porch or yard and I am telling her about our life. Hard to explain right now.

Deep breath

I just miss her so much and wish I could hold her one more time.

Deep breath

Cancer is Pain. Period.

Its been difficult starting our business. We attended our first conference last weekend in Dallas and it was a huge success. We retrieved 90 leads from nurses and nurse managers all over the US. They all loved our products and want samples for trial. It was overwhelming. Our booth was constantly packed with people. Although it was overwhelming, it was fun and we enjoyed meeting everyone as well as the feedback we received regarding our products. The difficult part was knowing our products were developed while our daughter was sick. I wish I didn't have this product, I would trade it all to have Saoirse back. I would trade it all to have her not had been sick.


There is no comparable feeling than to watch your child suffer.

There is no comparable feeling than watching your child die.

Cancer in children is a horrible thing. Its evil. Its unforgiving. Its ridged. Its smart.

Cancer doesn't consider feelings or thoughts.

Cancer doesn't care about pain.

Cancer is Pain. Period.

Deep breath.


We are going to help others with our products. Kezia is going to help others with her foundation. Its a choice to do this. We can sit and fall into our sorrow or we can embrace it and keep our heads high. We didn't teach Saoirse to fall into her sorrow, we encouraged and built encouragement and love. That is us, it has to be.


Deep breath.

I do not want the holidays to come

The past few weeks has been difficult. Usually I am excited about the holidays. I love decorating and getting the tree. This year not so much. Actually, I am not excited about it at all. I do not want the holidays to be here at all. Halloween was horrible. I really missed the excitement of what we would design for a costume for Saoirse. I know it was difficult on Kezia too. We just didn't seem very excited.

Deep Breath

I am not sure I want an xmas tree this year either. I guess I just feel overwhelmed that it has almost been a year. I miss holding her. I miss her learning and smiling and being excited about things she discovers. I miss her playing with Fallon. I feel her presence here in the house too. Its just so surreal.

There are some things that I can't/won't put away yet.


Folded clothes I put on my dresser about a week before she died as well as her sweater and toothbrush

Folded clothes and one of her clothes hangers and a bag of snacks. I put these there on my bedroom radiator the day before we took her to the hospital last year

Her changing table. Nothing has changed yet. her shoes are still there as if they are waiting for her feet.

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.

New York City and OCC

The last think I heard Saoirse say was "Elmo". So I decide that Saoirse's Elmo will travel with us everywhere we go. She also loved Curious George. It was easier to put Curious George's shirt on Elmo. Here are some shots from our recent visit to NYC

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.

Dreams

My dreams have been potent. I am having terrible night mares. Most nights I just don't want to go to sleep for fear of my dreams. My dreams are about Saoirse. Sometimes they are of her dying and sometimes they are about her being gone and I am frantically trying to find her because she needs her medicine. Other times I am in a dark space and I am yelling "Saoirse". Other times there is a guy in a white coat (its a doctor, the doctor who I saw sticking needles in her chest when she was being intubated). He is holding her and walking away. I try to run after them but I just can't catch up. I can see Saoirse looking back at me crying. I had that dream the other night, waking up trying to catch my breath. 

I was talking with people earlier this week about dreams. Now, sometimes I have good and enduring dreams. I have only had 2 or 3 dreams that I can remember of Saoirse where I woke up feeling good. I believe she visits me in my dreams when that happens. I believe she visits me all the time around the house and yard. I sense she is here. 

All in all, I am staying motivated and grounded. I am assured by other parents who have lost a child to cancer - actually who has lost a child, that I am not crazy. 

I miss Saoirse. I just wish I could hold her one more time. 

Deep breath. 

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.) 

memoires

I have been having a rough past few days. Kezia too. We are just so frustrated and angry. We are holding strong and doing small projects. I have a lot to write about and will do so later this afternoon or evening. This morning is reserved for paperwork and phone calls. fun. then the xmas tree needs to be takes down. this is so hard for me. i remember the evening we put it up. Saoirse had such a good night. for a couple of hours. its a great memory. Kezia is going out with her mom and sister so i am going to work on cleaning out the dining room and putting boxes in the basement and then go out to the garage and pull out the wood stove. I miss her so bad. its still like a dream, surreal. its been 3 weeks and i still have the feeling she is going to come walking around the corner. i still hear her playing in the kitchen with her music waker and fridge magnets. i miss feeding her her milk in the morning. watching george or elmo, sometimes dinosaur train or cat in the hat. then when she finished her milk she would get down on the floor and walk over and say hi to fallon. :) fallon really looked forward to this morning ritual. lol. then saoirse would go find some toys to play with, or try to remove all of the DVD's from the shelf. :) she was so funny. she would just talk talk talk. i taught her how to whistle, and apparently it only took 1 lesson. one day i noticed her walking around with her lips puckered and she was just walking around the house exploring and whistling. :) fun memories. more later.

deep breath