Eyes.

I woke up this morning to Kezia crying in her sleep. She had a bad dream. I went back to sleep and when I woke up all I heard was Saoirse talking. I heard her telling us about a book (a video we have) and of her singing the cat in the hat song. She started to hum it. These are still bitter sweet moments for me. I want to cry because I miss her, yet memories of her make me smile and laugh. She was so funny. And clever. And strong.

She loved it when I would get down on the floor to play with her. As soon as she saw me she would smile and get excited. I could immediately see her look for the toy she wanted me to play with. She would find it, go get it and bring it to me. She loved playing so much. I loved playing with her. I could watch her learn as she played. I could see the connections happen in her eyes. Her eyes always showed her feelings.

Thats enough for now. I have a business to run.

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.