Tuesday, February 12, 2013

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


  1. I am so desperately sorry for your loss, my friend Cindy lost her little boy 4 months ago on Sunday! Superty.org. It's something I pray I never have to endure first hand. I will pray for you and your wife!
    With love & prayers
    Kristi Garcia
    Westhampton NY

  2. Sorry for your loss, my cousins daughter is in the middle of treatment for the same cancer, she is four years old and has been battling for several months. I pray for you and your wife so sorry. x

    1. Thank you for your comment. If she needs help with anything direct her to www.fitzgeraldcancerfund.org , its Kezia's foundation.

  3. I started following your story when CNN first had it on their website. I started following you on Facebook. I remember checking your updates on the day she died and reading Kezia's post about her fighting to the end. I was numb for days, numb in grief for a child, a family I had never met. I didn't stop following you. I still check both of your blogs. I still cry. I still think of my 2 girls and realize they could get sick at any time. My Lily was born in June 2010. We are still out there for you.

    After Saoirse died, I printed out a page with 2 of her photos on it. It still hangs at my desk.

    Don't stop writing, people are still are reading and praying for you!

  4. Thank you for writing. keep writing and dont stop because you are not only helping yourself but you are helping others too.


  5. Thanks for being honest and real. I know you say that it helps you and I'm really glad putting how you feel into this blog helps you process the horror of watching your little baby slip away, but I want you to know it helps others to realize how hard it really is, how important it is to have people there for you, and how very many families childhood cancer affects. Please don't ever stop writing, even if just to say hi, people are listening and their getting the picture of how important it is to always fight childhood cancer.

  6. i know it is hard. The pain doesn't go away - ever. I hope that you and Kezia can make it to Camp Sunshine in May. You will meet other Dad's who lost their beautiful children. It will help to talk to other dads that understand the ptsd that you are going through.


  7. My son was 18 years old, the day before he and his twin brother's 19th birthday, when he died of T cell lymphoblastic lymphoma. His chest was full of fluid from the lymphoma,he had fluid around his heart and in his abdomen. The lymph nodes along his spine were pushing on nerves that caused him tremendous pain. He basically drown in the cancer fluid and it was not an easy thing to watch. This was in 2007. Cancer sucks, that's all there is to it. I could relate to so much of what you have written here. We still support the hospital that took such good care of our son. Do you know Gen Chamblee? You should go to her foundation site she started in memory of her daughter Sierra Rayn, who also died of Neuroblastoma at 2 /12 years old http://www.sierrarayn.org/ Gen is an amazing person and provides support for the families and raising money for research. she is also on facebook as well https://www.facebook.com/sierraraynfdn?ref=ts&fref=ts Keep on putting out the word about childhood cancer, people need to know. 1 in 7 children that die from childhood cancer have neuroblastoma, so the research needs to focus on our future and help these kiddos. Cyndi Reinhardt, Albuquerque New Mexico.

    1. Thank you for sharing and I am sorry for your loss. We know Gen and her foundation. She does great work. Thank you again

  8. Again .... beautiful post, Mike. Thank you. Prayers for you all. God bless little Saorise.

  9. As the parent of 3 young children I can only imagine the heartache you feel. I worry everyday about cancer hurting another person n my family. (I lost my mother and grandfather to it and 3 out of 4 of my grandparents have had cancer along with my husband both my parents and my husbands parents.) I feel like it is just a matter of time before it comes to our door again.
    I am so sorry that you have had to go through this, you know that you are helping someone else by sharing your story. So thank you for bringing truth to the fight against this life altering disease.

  10. Keep writing and keep writing and feeling the way that you want you. Love to you and yours.

  11. Dear Mike,

    You are so right. What happened to your daughter was cruel and there is no silver lining. People who pressure you to "move-on" or "see the positive" are absolutely oblivious. Those who read what you say either suffered a similar loss or have the human capacity to try and learn. Your writing, in part, carries on your daughter's legacy. She deserves that. You take things as slow as you need to. Don't ever cave to society's pressure to make it easier on itself. Your voice is desperately needed.

    Thinking of you. Carla Davidoff