Tuesday, December 20, 2011

2nd Post today

This is one of the ways I can deal. And try to work through this day. And to try to make some sense out of all of this. I feel so empty and lost inside. I am angry and I hate that we are going somewhere and not packing up a diaper bag and getting Saoirse ready. I am so angry. I feel like I failed her at some point. I feel like I missed something. I feel like she died to soon. I feel like she should not have died at all. I keep thinking about my life in the future and knowing that she will not be there except in spirit.

Deep breath... lots of them

I am angry because the national news isn't talking about Neuroblastoma. I email them. I post to their sites. I twitter. I will continue to do this until they listen and put us on so we can tell more people our story. They should be telling people about it and helping to raise funds to fight it and conquer it. I want to do this. I have to tell everyone about it. more people. Millions of more people.

Deep breath...

I think I will go for a walk. I can't believe it has been a whole week. a whole week.

17 comments:

  1. I am angry for you! I don't know you, Kezia or Saoirse but following your story for the past two months has changed me. It's a change I know I need to listen to. I commit to helping in whatever way I can to raise awareness about this hideous disease and raising money to finding a cure. I hope we can carry some of the anger and pain for you!

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  2. I want to offer some words of comfort, but I don't know what to say except that my heart aches for you and your family. I don't have children, so I can't even begin to imagine what you are going through. Just trying to imagine it is heartbreaking. Please know that you are in the thoughts and prayers of many, including complete strangers such as myself. God bless you and your family.

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  3. Mike and Kezia,

    Each anniversary will burn like the day that you lost her. I am absolutely angry too and I have also been reaching out to media outlets myself - sending them a link to your blog, hoping that the more people who get angry, the more people will push for a cure. We also lost a family member to neuroblastoma and I am so sorry that another family had to go through losing a baby.
    Nicole

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  4. As the mother of a 7 year old, 12 month old and expecting again in May, I cry tears for you. I pray for you and your family to find the strength to push forward in life. Just know she is in God's hands now and is now looking after YOU! God bless you and your family.

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  5. My brother in law was diagnosed with Neuroblastoma when he was 13 mos I believe. This was 37 years ago! They told my in laws that they gave him a 1% chance of survival. My father in law was in the Navy, so they treated him at the Rhode Island Naval hospital. They didn't know much back then, but from what they have told me, they thru everything at him, until the treatment itself almost took his life! He survived, and is fine today, besides a large scar from his surgery to remove the large tumor, and a lot of burn marks from his radiation, he is fine. My mother in law credits it to God, I don't believe in God, so I credit it to pure luck, and his body reacting well to the treatment. I am so sorry that your baby lost her battle, it makes me so angry that all cancer research is funded differently, that some cancers are hardly recognized when mentioned, and some are funded by the billions, it does not seem fare. I wish all cancers were funded like breast cancer, and even prostate, also colon has come a long way. Cancer is becoming an epidemic in this country, in one year, I knew 4 people diagnosed with different cancers and it is horrible to see what they go through! I wish so desperately, something more could be done!! I always donate to St Jude's, I think their program is wonderful. But it never seems like enough. Maybe if we took all the money spent on fighting these rediculouse wars, and wage our on war on cancer, we could put a dent in it. I don't know what the answer is....I know it is scary and sad. I so hope in time you heal, and keep trying to bring it to people's attention, your daughter deserves it, you deserve it, we all deserve

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  6. Mike! Let's do this. Let the world know how important it is to educate parents and work on early diagnoses and training people to find the way to react faster instead of sending them here and there and everywhere. I am with you. I cannot stand our little angels to suffer because of our ill manner and lack of knowledge. Let's do this. But before hand, WE WANT YOU TO BE BETTER and STOP ANGRY AT YOURSELF! You did as much as you can or even better, you did the best. Saoirse is in the heaven and she will be in our heart.. Always!

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  7. She absolutely died too soon, but not because you failed her in any way, but because of this horrible disease. You and Kezia are going to help so many people through your love for your daughter, I just know it.

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  8. I wrote to Ellen to ask her to put you on her show or mention NB to get the word out. I sent her a link to your blog too. We will try with you to get the word out. It's ok to be angry, you lost your little girl. This anger will be put to good use to make more people knowledgeable about this terrible disease.

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  10. Hi. I'm 17. I have no children and not even smaller brothers or sisters. I can't say that I fully understand what you're feeling because I honestly find it hard to figure out - after all, when you lose a parent, you become an orfan, but when you lose a children, well, there's no word for that. But I want you to know that your national news may not be spreading the word, but last wednesday I saw at a site what happened to Saoirse. And you know what?
    I'm from Brazil. And that site is one of the best online source for news, and also one of the most accessed by portuguese speakers.
    So maybe what the press is doing can't be enough, but we can say that it's a start and that you guys are reaching more people than you think.
    I am terribly sorry for your lost. I really do. But Saoirse means freedom - and now, she truly is.
    Keep fighting.

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  11. I can't imagine the pain of losing a child...the grief and sadness. You and your wife were chosen to be her mom and dad for a reason. I truly believe that. I would suggest you get in touch with the Layla Grace Foundation. I contacted the mom, Shanna, and I believe she e-mailed you guys. Her mission in life in the same as yours...and I think you would be a great team.

    I live one town over from you and I am a teacher in Salem. I wanted to let you know that I am running 10 local road races in honor of Saoirse. In addition I am being sponsored for each race I complete and will donate all of the money to your fund. My hope is that I can help give you one less thing to worry about as you try to move forward. Your little girl has inspired me.

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  12. I went through this with my dad's cancer he had carcinoma of unknown primary and it was so hard to find a doctor or information no matter how hard we tried. He was dead in 8 months. Yes it was different Saoirse was so young and had not had a chance to live much life. But it is still frustrating when it a disease with little information and little medical support.

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  13. All of you are in my prayers.

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  14. My wife spotted something abnormal when our daughter was 12 months and pointed it out to the pediatrician, if she had done an x-ray then her Neuroblastoma may have been caught at Stage 2. Instead we ended up at the ER 6 months later to find out that she had Stage 4 High Risk.

    That same pediatrician also had another patient diagnosed with Stage 4 NB n the same week, she now does screenings for early cancers.

    I would not worry about getting national media attention for NB, it is very rare. St. Jude's, Alex's Lemonade Stand, the American Cancer Society, CureSearch, Pedal The Cause and many others are doing GREAT work in research and advocacy. Any of those or many other organizations would love your support and contributions.

    If you want to focus your efforts check into educating doctors on the symptoms.

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  15. your feelings are very normal. As my son lay dying, I asked "why did we do this surgery!?!" - In reality, it was our only option - but still. Try not to be so hard on yourself - You both did EVERYTHING you could for your baby! When you are ready - please consider going to one of the Compassionate Friends groups. It is a group for parents that have lost a child. My husband and I started a few months after our son died, and have found it very helpful.
    http://www.compassionatefriends.org/Find_Support/Chapters/Chapter_Locator.aspx

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  16. I'm so sorry for your loss. I just wanted to let you know that your voice is being heard. Please know that your not alone in your fight and you have people around the world willing to stand and fight for the injustice. My prayers will be with your family.

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