Thursday, March 7, 2013

Sorry if my life depresses you for a second

“I don’t read your blog, it’s too sad.”

This is a statement I have heard countless times from friends and acquaintances.  I have also had some people tell me that when they share Ty’s story, they sometimes get a similar response.  Or they are questioned why they would care so much about these kids with cancer, "Isn't it too depressing?"  Yes, kids with cancer is very, very sad and very, very unfair.  But it exists, it is a horrific problem, and nobody wants to talk about it because it's too depressing?  I don't get it.  Every child is at risk.  We can't keep turning a blind eye.

I understand that it is very sad, and I certainly don't expect people to hang on my every word, but it used to bother me if someone proceeded to ask me how Ty was doing following a statement like that.  I began writing about Ty’s life with cancer because it was too painful for me to talk about it.  To explain medical details over and over and over again.  I wanted to say… “if you want to know how he’s doing READ THE BLOG!” I didn’t, that’s not my style, but how I wanted to sometimes.  Instead I would share the latest news and politely update whoever was asking.  In hindsight, it was hurtful to make me answer that question when everyone knows I created this forum to avoid having to do just that.  Sorry my life is too sad for you to read about, fine, but then don’t ask me to talk about it.  (I hope this doesn’t cause anyone to refrain from asking how I’m doing now – that is totally different and I truly appreciate that you care).

I don’t want to be polite anymore.   Instead I want to cram this message down people’s throats.  If they don’t want to read about it, then I want them to hear about it!  I want to get on a soapbox and talk about it all day long.  I don’t know why the media isn’t covering childhood cancer.  I don’t know why no one wants to talk about the sad truth that kids are dying every day and with more research we can give these kids a better chance.  I want to remind parents everywhere that NO CHILD is immune.  Cancer happens to children at random, and there is no known cause.  It is completely different than adult cancer, and it should be treated differently.  That instead, only one new drug specifically developed to treat pediatric cancer has been developed in 20 years, yet the incidence of the deadliest childhood cancers have increased by 29% in those same 20 years.  We need to stop using the same treatments that were designed for adults and start from scratch, break the mold and approach childhood cancer differently.  I want to hold up a photo of Ty, healthy, followed by photos of what cancer did to him – not just the disease, but the horrific treatments.  It was the medication that caused full body muscle myopathy.  It was the side effect of treatment that left him paralyzed from head-to-toe. 

Cancer is typically approached like weeding a garden.  Pull the weed (surgery), put something down the entire area to try and get at all the roots underground (chemo), and then sprinkle weed killer in hopes that no new weeds can grow (radiation). Of course, weeding a garden so aggressively also puts the healthy plants at risk.  This is why we need a new approach if we are going to save our kids. 

I recently shared an interesting article with Ty’s neurosurgeon, Dr. Jeff Greenfield, about a new tumor dye that is being used in the operating room. The dye reacts with cancer cells, causing them to change color.  This allows the surgeon to remove more of the tumor tissue while avoiding damage to the healthy tissue around it.  Obviously a very important factor when dealing with an organ as critical as the brain where only so much healthy tissue can be destroyed before irreversible damage is done.  Our wonderful doctor responded along these lines.. "Yes, we have started to use the dye.   My philosophical issue, however, is that we should instead be striving for a day when getting a 95% vs a 99% resection will be unnecessary. A moot point.  Our research efforts are directed toward targeted therapies instead, meaning we would require only a limited tumor biopsy or blood samples, then we can sequence the tumor, match the target drug, vaccine, molecule, what-have-you and treat the patient that way. It will put me out of the brain tumor operating business but I would be very happy with that."  That response right there is exactly why we need to fund research.  There are children that are suffering with a terminal prognosis, waiting for such a targeted therapy to become available to them. 
I often say that having Ty made me a better person.  When I reflect on our life before his diagnosis, though, I wonder about that.  Instead I think it was his diagnosis that made me a better person and a better mother.  Before he got sick, I was different.  I was more selfish and less empathetic to the problems of the world around me.  I loved my boys so much, never could I have imagined something would happen to them.  Not my Ty!  He was too wonderful, the light of my life.  He was going to be a quarterback, a surfer, a senator.  He was going to grow up to hold the door for girls and stick up for his classmates that get teased.  He was just a cool kid who was impossible not to love.


Oh how I wish I could go back to living that happy life with blinders on.  I wonder if I might have been the person that says, “Why do you read about all of these children with cancer, it’s too depressing.”  Or, “I can’t read that blog because it’s too sad.” I hope not.  But the truth is, I knew nothing about childhood cancer and never even heard of Caring Bridge or read a blog other than Perez Hilton.  I wish Ty never had to get sick in order for my eyes to be opened.  I want my self-absorbed little life back more than you can ever imagine.  But that is impossible.  Now I have a new purpose.  I need to continue sharing Ty’s story until more and more people listen and get behind the cause, regardless of how sad it is.  You know what isn’t sad?  A kid with cancer who gets better and goes on to become a quarterback, or a surfer, or a senator.   Together we can give more kids like Ty that opportunity.  

103 comments:

  1. I too felt that it was too depressing after reading your blog the day afer Ty died. I was devastated. consumed with the tragedy of it all and cried for days over Ty. Then I thought Cindy doesnt have the luxury of just shutting the computer off or avoiding this blog, why should I?? Im a mother. I havent lost a child. But I have suffered tremendous loss and tragedy in my own life and I would only Hope people would help when needed. I wear my Ty shirt especially when Im out in big public places, in the hopes that people read it and go to your blog. My teenage daughter even asked if she could have her own Ty shirt, which I ordered for her the other day. I have since read every single passed blog and looked at every single picture. I had too. Im a mother and I will always feel an obligation to your precious, innocent little baby as I would hope someone would do the same should I need it.

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    1. I feel the same way! And I can't wait to wear my SuperTy shirt and spread awareness about this beast called CANCER.

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  2. I was once one of those people who couldn't read about things like this, because it was just too hard to read. That has changed since I found you and many others on facebook. I follow many now and share your stories and will continue to do so. I live my life differently, because of people like you who have opened my eyes in so many ways. Thank you for sharing all you have and continue to share with us.

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  3. Cindy,
    You are right, we can't just go on with our lives ignoring this problem because 'it's too sad!'
    Well if it's so sad than we need to make it better
    You are so strong
    God bless you and Lou, Ty and Gavin

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  5. hate when people say that. I was in my own cancer treatments for melanoma when I was in my late twenties and u was so sick. It was the kids in the 9 th floor that kept my spirits up. Those "sad" stories were the strongest and most inspirational people I've ever seen. Keep spreading awareness. You are amazing and Ty is too.

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  6. Dear cindy && lou, it has been quite some time tht has passed that i have been on your blog .. && im here to inform you, besides saying im sorry for missing out on the amazing transistion you are taking, the awareness is being risen day by day .. a pt of mine saw my live for tay bracelet && asked about it, i was glad to tell him about tay filorimo, ronan, && ty ..

    he has agreed to completely deacal the crap outta my car with a super ty bumper sticker, && decal for my windows, bubmper sticker for ronan && tay ..

    we are also hosting a marathon i do believe the very last weekend of march which im beyond stoked about ..

    day by day this becomes more well known , i think ive seen more st jude research hospital commercials that i have ever !!!!!


    god bless you && ur beautiful family cindy ..
    dont give up,
    u will have your ups && downs, its nothing but a rollercoaster, but take life as a journey ..
    live life FOR TY
    ..
    im sure hed love to watch his mommy, daddy && brother jump in some mud puddles together ")

    god bless

    Sofia, aiden ((3 years old, almost 4)) && jr ((1 && turning 2 nxt week))

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  7. "We can't keep turning a blind eye."

    You're right...we can't do that

    I do feel sad when I read blogs about sick children but the more I read, the more I get inspire to do something about it. They are so little yet so strong and they deserved the best treatment.

    Your family is amazing<3

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  8. Well Spoken!


    ~Much Love
    ~Michelle Hughes, North Ga.

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  9. I have heard those reactions from people who I share your updates with. They can't handle hearing about it. I am drawn to your story because in a way, I am your life "before the diagnosis"....I don't have a pinch of the horror that you have in your life. The least I can do is listen, and be grounded by the very real details of your story. It puts things like a "lost sweatshirt" or "a high fuel bill" into such perspective...And of course the awareness you're are spreading is an eye opener. It's OK for you to make me sad...

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  10. I hear things like that everyday, It makes me crazy, Cindy, just last night day 51 of my emails to the Ellen degenerous show, wrote how if all of us looked, donated a little time and money, this wouldn't be depressing, how sad and selfish people are! Pediatric cancer is rare, until it's your kid! Help so if randomly it is your kid, there will be treatments! Geez! If anyone wants to help writing emails to Ellen so Cindy can have a huge soap box with millions of people watching her and hearing about Ty! Please do! Day 52 today of my emails, and unless we come together as human beings, this will be a slow process. 7 kids everyday die, what the f@&k are we doing to have let this happen! I am so grateful for Cindy, I am a social worker by trade, so I try to help people everyday, adults who have lived and have CHOICE! Children DO NOT, and we as a society turn our heads, the more that happens the more kids die. 364 kids have died since I started writing to Ellen! Holy moly! Over 2000 diagnosed! Help!

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  11. It's easy to turn a blind eye, you know that. I tell everyone your story I even emailed the today show yesterday morning, I was pissed they aired Martha Stewart's legal battles about where her products can be sold... Even had her in the studio....Who the f***cares, really!! That's newsworthy? All over the front page of the daily news too, I am so angered right now and that's how we all need to be....start moving and shaking things up.
    Your blog is heart wrenching to read and I cried for weeks, still do but now I'm a bit angry...so let it be my motivator and everyone's else's too!
    Suzanne B.

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  12. Amen Sister!!! You have opened my eyes and I'm committed to help others open their eyes. I have been and will always continue to read this and other blogs and do what I can to spread the word.

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  13. I don't get it either. I get teased by friends and family for reading your blog and others. Whenever I see a blog on facebook of another warrier I "like" it, to show support to the family. I've had friends post things on my wall like "will you please stop your obsession with dying children". Really? Cause then it'll go away? shame on them! We are here Cindy, we are listening, and we love you. Yes, it's sad sometimes, my goodness, the day Ty died I was sobbing most of the day and could barely function at work because I was thinking of you all, but that's nothing compared to what you and so many other families are going through. Keep blogging away!

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  14. Oh this makes me so angry! How could someone say that to you! Try walking one step in your shoes! We are so blessed to have a healthy child and one that is due to arrive tomorrow! I never stop reading our blog and TALKING to people about pediatric cancer. It makes me sick to know how little support this F-ing disease gets. You blog and Maya's has made me stop and live and love every moment. I am proud to say that I don't take my family for granted and I don't miss a moment of my kid's life. I met my husband raising money to fight pediatric cancer. The fight in in our blood, it is weaved into this family and we have never been personally affected. UGh I am so angry that you have to listen to people's comments like you have dealt with!

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  15. Some people are just plain ignorant. I don't even know what to say. I am hanging on your every word. I want to read everything you write. It's not a movie, it's someone's daily reality. If you have the guts to live through it, people should have the guts to read it! Love you, Cindy!

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  16. I too have heard that, and my response is "that's exactly why I read and talk about Ty. Because I would think YOU would want me to read about your life if it were you battling this with your precious kids. And that's why I do it for Cindy". Simple, to the point but effective. I keep talking. If people don't want to hear it, then tune me out. i'm here to stay for Ty, Ronan and all the other children past, present and future who have to deal with the C word. DISGUSTING! HOW COULD WE NOT DO SOMETHING ABOUT IT!!!!

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  17. I have to say, I have thought this alot. If it wasnt for your blog, I would have had no idea the effects of this horrible disease. The horrible treatments. The number of CHILDREN that have passed or are being sent home on Hospice with no other alternatives. It is SAD, it HURTS. I talk about Ty alot and I can see the looks on the other mothers as soon as I say something. Then, to top it off, I can't mention Ty with out tears in my eyes. I can't respond to your blog with out tears in my eyes. They kind of avoid the converation or let me say my peace and end it. I want to yell at them. Tell them it could be anyone's child. But so right you are! I have been following some of the others and their fights. It has been the same. The treatments have left them just as sick (sometimes I think, sicker) than the cancer raviging their little bodies. I know they are probably tired of seeing my FB posts and shares of Ty, Kelly, Leelynd, Cole. I don't even want to go on. Unfortunately, it takes it hitting close to home before anyone takes a look. Before anyone starts to raise awareness. I too, until you, had blinders on. Not anymore!! I try to stand up for you and the kids and the parents. You are ALL my heroes. Please know, I try to help anyway I can. I try to spread the word as much as I possibly can.

    Also, I have been wording pediatric cancer, CHILDHOOD cancer. The reason is that pediatric to me, doesn't have the same effect. We need to put that CHILD in there. We need to seperate drastically CHILDHOOD cancer from adults cancer. Adn to me, that is a start. Pediatric to close or sounding like geriatric (sp,sorry). It seems to not have as much of an effect.

    FUcancer, FU CHILDHOOD CANCER!!

    Cindy, as always, you and Lou and Gavin are in my thoughts and prayers. God Bless you! You will do great things. xoxoxoxoxoxoxo

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  18. I don't get it either yet each time I share stories of Ty or Ronan -- or the 30 other kids I am following -- generally I'm met with the response that it's so depressing...that it's not good for me to follow the stories as they are simply too sad.
    I'll agree that there are days that the tears just fall and my empathy puts me into the shoes of the parent or the child...and my heart has broken over and over. But because I am lucky enough to not have a kid with cancer -- I walk away and find renewed strength to play the extra game or run outside and do messy things...
    I think most of us that read your blog and others really have become better parents...more aware of the moments and the days and simply wanting our kids to enjoy the time at hand. For me that is the selfish part of reading the blogs...
    When I share the stories about these kids and how utterly unfair things are...people simply want me to stop talking. Some people really do believe that the vast majority of childhood cancer is conquered...and with some types there have been vast advancements since the 1950s...but not all and I think it is so important for people to know. I think it's vital for people to realize how different childhood cancer is...and that it is anything but solved.
    Further...I think it's about being a community. I think families with kids with cancer need our help on so many levels that as a group and a community we need to help them fight this fight. Fight for more research...and also just be more intune with what is going on.
    Your blog really has opened my eyes...keep telling people and someday I think we will see a change.
    Laura

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  19. I find your blog to be so inspiring and eye-opening that I can't help but need to be a better person and try to help where I can. I used to hate just watching the news for all the sad or horrible things out there but this is our world and our lives and people like you and Lou are needed in it to help the rest of us learn what we need to to make it better for everyone. I'm sorry that other people feel that this is to much for them to read or learn about but I don't think you should ever stop!! Ty fought so hard and was so brave that we all need to fight just as hard to make sure it changes for the next Ty. Thank you for all you have taught me about being a more compassionate person and a better mother to my children.

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  20. As sad as your posts are, I have been keeping up with your blog since the beginning. For me it is a reality check not to take anything for granted. This is the first time I have ever commented on your posts, but feel that you needed to know, that this blog is so very important, to make everyone aware that cancer does not discriminate. It can happen to anyone. We need to find a cure, we need to help our babies. What you are doing is so wonderful, and if there were more people in the world like you and your husband the world would be a better place. Your boys are beautiful, and Ty was just amazing. He will always be with you now and forever. I have two boys myself and because of you I strive to be a better mommy. I will never forget any of you and will continue to be a supporter. God BLess you and your family.

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  21. As always, perfectly said, Cindy! Like so many others, learning about Ty's struggle opened my mind, my heart and most importantly, my eyes. I began following other children's stories and speaking out in my own life how critical this cause is. I sneak into my kids' rooms at night, look at them sleeping, put my hands on them and plead to God there is not a beast lurking in their bodies. Because there could be. This could happen to anyone--and DOES--every single day.

    Thing is, Ty is not "just anyone". He clearly is touched by a special grace that goes way beyond his diagnosis. Keep writing and sharing as you do. The sadness that lies in this experience IS hard to digest as a reader. But in facing it, we ask deeper questions in our own life and we demand more of ourselves in mobilizing this fight. What a gift this blog has been to so many of us! As a reader, once you know Ty's story, you cannot turn away. Keep the faith. We are with you.

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  22. People want rainbows and unicorns. Well, I feel sorry for them. I have had people ask me why I read your blog when I am so devastated afterward. I tell them: Because if Ty had to endure it, then SOMEONE SHOULD KNOW! Next time it could be my child, or yours. Those people stop talking to me - or don't. But I don't want someone in my life that doesn't GET THIS. REALLY get it. I will never stop following and researching and forwarding and challenging. If we did, then all these beautiful children's suffering would have been in vain. And I will NEVER let that happen. Cindy, I wish beyond wishes it didn't have to be this way - that Ty never had to experience what he did. But for every weak and spineless person who can't read about it because "it's too sad" there are a dozen of us who read about it because it is too sad and we want to change that. Thank you for being you.

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  23. amazingly said. people who say that need to take their blinders off and realize the world isnt a perfect little fairy tale. And unfortunate stuff happens in life.. What happend to your family is devastating. but you're trying to turn it around and make something from it. Make tys story known, and fight back against childhood cancer. Thats amazing and takes courage and drive. Cindy, you and your family amazes me.
    Hearts, hugs and ladybugs <3
    Meg

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  24. I hope you never give in to those people who say that they don't read your blog because it's 'too sad'. Obviously it's sad, it is a mother telling the story of losing her child, of her son losing his big brother, of her husband losing his first born son. It doesn't get any sadder than that. But what people don't seem to realize is that this is not a made up story to make people sad. This is your reality and this could happen to any one of us. No one is immune to this. I do hang on your every word. I really do. I can honestly and truthfully say that reading this blog has made me more patient, loving and thankful with my children. You have made me a better mother. And i mean that whole heartedly. Thank you for being so brave. And for being such an incredible mother to such an amazing boy. Ty WILL make a difference. I know it in my heart. He already has..............keep up the good work you are doing Cindy. There is a special place in heaven for you, right beside your SuperTy. :)
    - Courtney
    Tempe, AZ

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  25. This comment has been removed by a blog administrator.

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    1. Please stop putting up your homepage link. It's rude and tacky. This is not a platform for your sales.

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    2. Agreed!!! No one here wants to see this.

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    3. FYI this is spam and I could almost guarantee it just gets randomly posted....don't let it upset you, better to ignore, ignore, ignore.....

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  26. Yes, your blog is sad but it's important also. Sometimes I cry for your family and Ty, sometime I smile when I see a picture of him, but I always say a prayer to end childhood cancer. I think about Ty when my kids drive me crazy and I want to yell at them, I try to be more patient and calmer because you never know when all your true happiness could end.

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  27. Cindy - There is no need for you to be accomodating to other people. You, I am certain, have been that way since Ty was sick. And now, you're right, time to stop being polite. It amazes me to read this and see that people are still so selfish. You and Ty have taught me so much about being a good mom. And I thank you.

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  28. I used to be one with blinders on, I never thought about Pediatric Cancer, it didn't effect me! But when I learned of Ty and Ronan I realized how passionate I could be about something. So when I did a penny drive for the TLC Foundation last year people asked me the same thing, "Why would you involve yourself that is so terribly sad." My answer is, because someone needs to. The more people that get involved and raise money the better chances the world has of saving a child. A child like Ty or Ronan or Teddy, I could go on and on. Yes I cry....alot when I read your blog, but it is becuase I am not afriad to care. I love Ty and I think you do a fantastic thing with your blog and the foundation. Don't be polite anymore, this is your baby and your life!

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  29. Cindy, it truly is amazing to me how selfish people can be - I don't want to read your blog, it's too sad, but please rehash every detail with me because I can't be bothered to read it??? Unreal.

    On another note, I wish the media was covering childhood cancer more too! George & Barbara Bush's 3-year-old daughter Robin died of leukemia in 1953. The Today Show had an interview last year between Barbara and Jenna Bush.

    http://todaynews.today.com/_news/2012/11/20/15306859-barbara-bush-recalls-daughters-death-i-saw-her-spirit-go?lite


    The little girl had leukemia, and the story states that leukemia rates for survival have improved to 94% these days, but what about other childhood cancers??? I wish we could tap into the Bush family notoreity and influence (Jenna Bush is on the Today Show!) and have them shed more light on childhood cancer!!!

    - Lisa

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    1. I was floored when I learned about the Bushes and slightly dismayed that through two president's - they haven't done more to provide better funding for research!!!

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    2. I agree - they could use their notoreity as a platform to promote more awareness, more funding, to help more kids!! It is such a shame!!

      - Lisa

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  30. Yes it is sad and depressing to read about these children. But oh so necessary! Thank you for your continued candor and ability to relate true feelings. We should all be so honest.

    Reading about Ty has given me the opportunity to read about other families fighting. It is a blessing to be able to just give them a word of support and to pray for them. This is what you gave me...among other things. The awareness to help others and to share Ty and other children's struggles is an honor. Thank you for making me aware!!

    Keep shouting & sharing Ty's story. You are making a huge difference. We will share his story also. Emma, Zachary and I continue to pray for you, Lou and Gavin.

    Hugs,
    Linda Baumann
    Norfolk, NE

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  31. I am an alternative healthcare provider who sees patients who have or have had cancer every single day. I agree something has to be done about cancer but I also believe we need one parent, one person who will fight as you are fighting but to uncover the truths about what can be done about cancer. I treat patients who are told they have 3 months to live and they continue to live but the doctors than say "we were wrong." No one gives any credit to alternative care and it is a true disservice to patients because every single patient I have, came to me out of desperation. Not one of them was referred by their MD. Many of them come despite the recommendation of their MD poopooing the idea. Many of them come only when Western medicine has given up on them and they have a death sentence. Now I'm left picking up the pieces, trying to reverse the damage of the treatment, the side effects of the drugs. If we could only work together. Yet, no one wants to see our numbers. No one wants to see what we know. We are called Quacks. I treat patients with things that wouldn't harm a fly and at a minimum the quality of life is improved but it is much more than that. A quick electro auricular treatment and a patient who can't get out of bed with nausea is up and feeling much better. A mom who has no energy to even fold a load of laundry can do so much more. The immune system goes up and so on and so on and so on. Most importantly we try to get to the ROOT of the problem. Cutting out a tumor may work but what caused the tumor to grow in the first place? We address that question. I have a full practice. Every single day I am thanked and told I changed their life. Every single day I am asked "why didn't my doctor tell me about this (treatment) when I was first diagnosed?" or "I lost so many years when this was right here." My guess is you, Cindy, will read this email and write me off. People put on blinders and assume the only way we can do this is with Western medicine. We tend to put blind faith in our children's MD's and we ignore what alternative medicine can do because the doctor said it isn't of use. And here is my gripe with that. You would never ever go to a Podiatrist (foot doctor) and ask him for advice on how to treat cancer or if it was a good option. Never. Yet we will ask our Western physician if another form of medicine will work and take his word as the gospel. Yet he isn't and has never been trained in the alternative world of medicine! His knowledge comes from reading Google or whatever he heard from another untrained person. When do we, as patients and parents wake up and dig a little deeper. Is $200 for a consultation with an alternative provider worth it for the CHANCE that it might work? We tend to say we will do anything for our children but we don't because we've been made to believe it will be $200 wasted. We hear what the MD says and we look no further. We don't stop and think that he isn't trained in these other forms of medicine-how would he know. We don't stop and realize no, there isn't research because NO ONE WILL PAY FOR IT! It doesn't mean it isn't valid. We won't give our children an herb because the MD says "it isn't proven" yet we sign off on a drug that is known to have side effects that kill. And everyone should know the side effects kill as much if not more than the cancer does. When is the last time you heard of a person dying by taking an herb? Western medicine has FAILED us in so many ways and cancer is one of them. Until people get so fed up that the masses are willing to seek out alternative care and see what is out there, people, including children, will continue to die of cancer. I have to write as "anonymous" because of what I see happen to colleagues. When I see what happened to Burzynski. It is shameful.

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  32. Continued because it was too long:

    Am I angry? I am very angry because I see kids like Ty die when I don't believe they had to. When I see and read the blog and see he is paralyzed.. my heart skips 10 beats. It isn't a surprise--it is almost expected because I've seen it too much. It is that what makes the blogs hard to read for me. When I see children (and adults) suffering and know what is out there. I have to hold my tongue because I'm the "quack." Yet I'm the "quack" who sees those terminal patients that the Western world discarded and gave up on. I'm the one who nurses many back. I'm the one picking up the pieces and trying to give them life back. I'm the one who sees patients 5 years after they were told they had weeks to live. There are answers. Most just do not look hard enough to find them and cling to their MD's words as if they were spoken directly from God and fear looking for an alternative. I hope you understand my anger is NOT directed at you. It is just that this system is so broken. Not just in cancer, medicine in general. It breaks my heart on a daily basis to see what people go through when I believe it is not necessary. I live it, I see it, I breathe it.

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    1. I believe you!! Thank God for people like you! I'm a proud supporter of Dr Burzinski!!!

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  33. I often get that response when I tell people about Ty and some of the other children that are suffering, but I also emphasize the beauty of it and how it has impacted my life in a positive way. Not only the everyday like hugging and praising my kids more, living in the moment, etc. but we also took a pretty epic trip from NC to TX because of Ty. I've mentioned this before, but we weren't going to make the drive as a family, it was just too much with 3 kids under 5. My husband was going to fly out there on his own for work and spend the week. But, the day Ty died I knew that we all had to travel together. And it was an incredible trip that none of us (well maybe our littlest) will ever forget. I eternally grateful to Ty and to you, Cindy, for giving us those memories. I admit, there are day, like last week, when I was battling my own challenges and didn't know if I could handle the sadness on top of my own sadness, after all, I have to be there for my own kids. But as soon as I could I came right to your blog to find out what I'd missed. I sometimes think I'm crazy (and others do too) because I care so much about Ty and your family since I don't know you, but then I come to your blog and realize that we all care. It's part of being human and part of a larger community. My grandfather died of cancer and when I asked him about chemo he said that the hardest part was watching the children get treatments. He said he'd give anything to be able to take their place and I knew he would. Thank you for sharing Ty's story and continuing to be strong and fight for children everywhere who are suffering from this awful disease.

    Hugs and tears from NC.

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  34. I want to shout with you Cindy!! I wear my gold ribbon and my SuperTy pin on my coat everyday - and when anyone comments I share as much of Ty's story that I can. I, a grown 40 yr old woman, proudly wears my Capt America SuperTy hat whenever it's cold too - I get lots of stares, lots of smiles and a few "love your hat" - and when time permits I share with that person why, a grown 40 yr old woman is wearing a Capt Amer hat. I know that cancer can happen anyone and that no on is exempt - once I became a mother I realized how selfishly I had lived my life and wasn't there for friends with kids - didn't understand how hard and isolating it can be when you have healthy kids!! When I learned about Remy and Ty - well I just knew it was time for me to stop living so selfishly and DO something. Support my friends. And something about Ty just touched my heart in a way that I can't describe - seeing how he kept that beautiful smile through what I can only imagine was incredible pain and suffering - i knew I couldn't sit back anymore and pretend his pain wasn't real, that there aren't thousands of other kids suffering that way. That it was my responsibility to help make a difference now so that maybe other kids have a better chance.

    I'll be fighting this fight for the rest of my life. Doing me best to help in any way I can. I send love and strength to you, Lou and Gavin. We say prayers to God every night so that he watches over Ty and keeps him safe.

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  35. I can't stand the "I can't because it's too sad" thing, either. A lot of people don't want to hear stories about my mom - whether it's a story about who she was as a person or a story of her journey with cancer because "it's too sad". She retired to die at 55. It is sad. Ty's story is 100 times sadder because at least my mom got 55 years. At least she got to have a family and a career she enjoyed. At least she got to live. Ty and all of you had so much stolen from you. It IS sad. It's devastating, really. But ignoring it doesn't make it go away - and more than likely, actually makes it happen more. Because ignoring it means research isn't funded, means that support is not there, means that cancer wins. Cancer has struck me too close to home for me to ignore it.

    Your energy to get the word out is amazing. I wish more people could fight a fight like you are doing. You inspire me to want to help more. I do talk about Ty, a child I never met, and his family and his journey - a family I've never met and a journey I only started "watching" at the end of one phase but beginning of another. Talking about it helps me. It can happen to me and my children and my husband. It is happening to my husband. Cancer doesn't care who it attacks nor does it care what phase of life they are in. My husband having to deal with cancer while also raising one year old twins sucks. It is taking away time and energy from what all of us would prefer to be doing - which is playing and enjoying this phase of family-hood - which we will never get back. We are confident my husband will be fine, but it is something we are all having to deal with and it sucks. Sad or not, it's reality.

    I also agree with you - that's pretty rude to say "I can't read, so just give me a personal update." I would honestly not do it. If people want the update, you have it out there for them. Their selfishness does not need to be your problem. I would say something along the lines of 'if reading it is sad for you, then hearing it and seeing the tears in my eyes will be even worse so let me help you out' and then walk away.

    I don't think I can believe, honestly, that you were even remotely selfish or not empathetic. I think you could not be doing what you are doing today, could not have done what you did to help Ty through it all, could not have shared this blog with the world, even, if you had any tendency towards selfishness or couldn't be empathetic. Yeah, the blinders have been removed and life has changed drastically. But the core of who you were before all this is at the heart of being able to do what you are doing today to try and make it better for even just one child. I think it's ok that you were into your family and maybe even oblivious to what others might have been enduring. But that doesn't mean that there was any sort of selfishness there or lack of empathy. I only say this because I guess there needs to be a distinction between being a better mom vs. being an evolving mom. You've ALWAYS been an amazing mom. But you evolved with your circumstances. At the core, you've always had the ability to take that evolution that much further so that it wasn't just about what Ty and the Campbell family needed, but what could be done to make it better for the world. What you are doing with your foundation and project most people would never even think of let alone put in the time and effort to actually do something about.

    If people can't stand by you and help to make your life better by something as simple as reading a blog so that you don't have to rehash what is going on over and over and over then I don't think they are people that deserve your time or energy.

    Much love to you all,
    Lori

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    1. Well said Lori, and prayers for your husband's full recovery :)

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  36. AMEN, Cindy!! Sometimes I have things going on in my life that already make me upset and I know that if I read the blog I might just melt into a puddle right there in my office. So, I don't read it then and there...I go back later in the day or the next day when my head is clear and catch up. You know why? Well, aside from the fact that I love Ty and you and I want to know how you are doing...it is my duty. As a friend and a mom I owe it to myself and my family and all children not to hide under a rock because it's too sad to deal with. Give me a break!!

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  37. BRAVO TO YOU! I knew nothing of childhood cancer before you and Ty entered my life thru your blogs and now I have so many new little facebook friends to pray for ,and I do! You have opened my eyes to how lucky I have been that all of my 5 boys were healthy and now my 4 grandchildren. I pray for them all everyday that they stay that way. I feel in love with Ty thru you and will be forever greatful to you for that and for all the information you share with us every day. God bless you Cindy and as sad as these posts can make me, I am happy to have gotten to know your story thru them and will continue to read and cry and laugh with you. Don't ever stop telling Ty's story.Thank you!...Jean <3

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  38. Dear Cindy, while yes, it can be sad some days to read your blog and hear about Ty and so many other children, it is also uplifting and beautiful to see people come together and rally around each other. Thankfully, hand in hand we walk this road. And there is hope and love in your words. Yes, raw emotion, pain, but hope and love. I understand for some people, they don't want to see the pains of life. They would rather be ostrichs. For those who want to make a difference some how, some way, your blog provides that opportunity. So I thank you for your honesty in sharing our life. Don't stop. Together, with you, and others like you, a difference will be made!
    Shelly

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  39. Cindy,

    Every single word in your post is so very true. People who had an encounter with cancer, especially pediatric cancer, undergo a permament irreversible change. That is why it is so difficult for us to understand why smb can ignore a fundraiser for a sick baby or ask why I choose to read blogs that make me cry my eyes out. I have thought a lot about this change that happened to me too and the best I can describe it is - I do not take anything for granted any more. I know firsthand now that life can change in a blink of eye, when you least expect it. And things that you thought could only happen once in a blue moon only to people you do not know can actually happen to you. I believe this is the very reason why people shy away from these blogs and fundraisers and simple conversations. They live their lives thinking that they are immune to all these things, that they could only happen to others but not them. I realize that this change comes more naturally to those who got close and personal with pediatric or any other type of cancer. It is much more difficult to enter the word of cancer voluntarily. I have a lot of respect for those who choose to face cancer proactively. I have even more respect and gratitude to those who choose to continue fighting for others when it is no longer a fight of their own. Thank you Cindy!
    Helen, Houston TX

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  40. You may not think you are fearless,but you are! Keep spreading awareness and something will change. Keep that cup half full! For the ones who like to hide behind the curtain, well, it is a shame that they can't handle it. Even if they think it is sad, they are still aware. Cancer is not a friggin joy ride and how you have open our eyes to that. Ty, you were awesome and we know where some of that awesomeness comes from. The apple did not fall far from the tree.

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  41. Dear Cindy,
    Your story is sad, it is depressing, but being an overly sensitive and sympathetic mother of 3, your story is inspiring. I've never contacted you, but I post your blog and Ty's story all over my world... I share it with Facebook friends, work friends, Mom friends, in Church I share his story when I ask for prayers for you, Lou and Gavin. I've shared Ty's story as far as Sweden and people take notice, they pray, they donate, and if they're anything like me, they cry... a lot... Your blog is sad, but when I get my e-mail notification, I read (and often re-read), share, and talk about it. Ty's light in this world will only grow brighter and his legacy will include new cancer treatments for children, especially if his mama has anything to say about it!! God Bless you, Lou, and Gavin. God Bless the work you do. God Bless you for your enduring strength.

    Love and prayers sent your way.

    DJ Wells
    Fairport, NY

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  42. I dont know what to say cindy, all I can say is that I love you and your family... Ty will always be in my heart!! He is the reason I have changed my outlook, the way I deal with my own 4yr old son it is because I DO hang on to your every word on this blog every day! It is because of YOU that I am spreading ty's story and trying to get people to realize the epidemic that is killing our children.... I have lost loved ones to cancer, they were adults and cancer is cancer no matter what... but when a child, a little innocent being is dying it is not right I ask myself how??? how??? this is not OK!!!! So when you feel down, because there are people out there that dont wanna take the time to change their own lives because its "too sad" remember there are people like me and my family who are grateful for you sharing your life with us and who truly care! Yes it is sad, but its whats happening! Ignorance is bliss! I have said this before and I will say it again, its because of Ty and you sharing him that I am a better mom, because Ty and you that I lay there at night praying and thanking god for my baby boy and praying for ty and your whole family and praying that we can find a cure... and why I walk around proud wearing my super ty shirt parting my long hair in the back so that people can see the web address and ask what it is:o) Thank you cindy, you are adored by so many of us.

    Patricia G.
    Los Lunas, New Mexico

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  43. Cindy I was watching the Katie show this week and it was about the Newtown families who lost loved ones many 6 year old babies and each family stated we don't want to hear you can't watch this it's to sad we want you try to imagine our excruciating unbearable pain and sadness that is the only way to make the necessary changes to save our children ~ I feel the same way about your Blog I never met Ty but feel like I have , cried many tears reading it and I can honestly say Ty made me a better person xoxo

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  44. Never stop shouting from the rooftops! I read Ty's, Ronans and now Phoebes blogs everyday! How dare anyone not read them! I listen to "beam me up" everyday in my car and envision you and Ty reunited exactly as Pink describes it. I wish with all my heart it was possible for that to happen!

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    1. I love that so many people on here also know about Phoebe. The Fair's are some of my really good friends from Texas. That is just so cool!

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  45. I wish I could do more to spread the word. Ty's story affected me so much, and I can't even describe why. He was a boy that enchanted me somehow. His smile of the day through the pain he suffered, and I hoped and prayed he'd be better.
    You're a good mom. And you should know, I am reading every post on your blog. Depressing? Yes. But also important. And sometimes I cry when you tell us little stories about Ty. Because he is so cute! You keep him alive and I'm somehow thankful for that.
    Your blog is not mainly depressing. It keeps Ty alive and yes, it is a sad story but not all of it!
    You're great and so was Ty. Don't let others bring you down.

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  46. Hello Cindy,

    I completely applaude you for saying what you just said and dong what you are doing. You keep on blogging, because as sad as it is, you are still keeping Ty alive through your blog. And what a beautiful boy he was and forever will be. I wish for a second that I had enough courage that you do. After loosing my Zachary at 3 to Hebatablastoma, I could only withdraw and battle my feelings within myself. I went down a long dark road, risking alot along the way. Not saying that I did not have support from family and freinds, but I felt that my story was too sad for them to hear or just listen to me cry. I burried it so deep that I thought I was ok. And now 10 years later, my floodgates have opened and its hard to control. Our stories are sad and there are many people who don't want to hear them. But listen to me that you don't want to bury these feelings. Its very good to get them out. People choose to read your blog, if they don't like it, then don't need to read it. We need to get the awareness out there. We have too many of our children dying every day from this shit called Cancer. Once you enter this life, you can't go back to the real world where people live with a blindfold thinking their family is safe. I know I was one of those people. I was 22 when my baby got sick. When we recieved the news that we needed to go to Childrens Memorial to see an Onecologist, I didn't even know what it was. Until 20 minutes later when I found my son's father, his aunt and Grandma crying. Once I found out, I still couldn't imagine what was beyond those doors. And here I am 10 years later living in a world of paranoia, thinking my other 3 children is going to cancer or something aweful. Every sneeze, every cough is a visit to the doctor. And it's ok. As my pedetrician calls me "Crazy". But he understands why I am and he reassures me that everything will be ok. Even though I have his cell on speed dial :). I want you to know that your blog has helped me get through this pain. I hate the fact that its because you too know my pain. And for that I am very sorry. Ty is very special and will always be the light in your life along with Gavin. You will never heal, but one day you will see light agian. You will find joy again and you can smile when you think of Ty instead of cry. It is going to be a battle and everyone's journey is different. I will pray for you and your family that you can find happiness again soon.
    Becky

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    1. Becky, so sorry for your loss. Hugs and prayers

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    2. Becky:
      I understand about burying the hurt so huge all you want to do is scream and then scream some more. There are some who simply do not want what they perceive as a perfect life interrupted and there are others such as all of us who read this blog and love Cindy, Lou, Ty and Gavin beyond words, that want you to open up and share your pain. Your pain is ours. God bless you.

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  47. Hugs! Everyone has already written my exact thoughts, so I'll just offer hugs. And I'll listen/read your soapbox forever, because it does hurt and as a mom I share your pain. Nicole

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  48. Cindy, It's your reality and that of others as well. It's a shame that people who can't handle the truth don't just keep it to themselves instead of saying it's too depressing etc.... Stay up on that soap box, if you ever need someone to stand with you, I along with thousands of others will join you. If you ever need someone to hold you up there, we will. If you ever fall off it it (which I doubt will ever happen), we'll pick you back up!
    Keep being the voice! xoxo

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  49. Cindy & Lou,

    I want to hear about Ty all day long and about kids with Cancer all day long because that is what needs to be done and because I can't get enough of your little angel! Yes it is VERY sad, shall I suggest if they don't want to hear about it, to open their wallets and donate!

    I want you to continue to share Ty with us, with the world every second of the day! Awareness is desperately needed and you are going to shove Cancer down people's throats until no child has to go through what Ty did!

    You are AMAZING!

    Joy Marielle

    Baltimore, MD

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  50. I wonder if there are cancer parents out there willing to have a reality show featuring their struggles ? Maybe by having a show about pediatric cancer, we can shine the light on the lack of research and its' effects?
    If a reality show makes Honey Boo boo a household name, there is room for all the little amazing fighters out there for sure!
    I bet TLC would do it!

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  51. Your dam straight!!! You tell it Cindy!! People need to open there eyes to this "sad" disease, no one is safe no matter what kind of cancer. I feel very, very,very strong about raising awarenees for chidhood cancer, especially after reading your blog. I used to say it was too sad to watch St.Jude's hospital or too read a story , my mind has changed from your blog. Its my duty as a mother myself. THANKYOU!! My heart aslo bleeds for you and your family. I love Ty, and Iam with you for support in raising awareness. Ty no doubt would have been the most respectable gentelmen and is the bravest warrior who ever lived. Prayers. Love and support Mahopac, Ny

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  52. Hi there.


    This might be the first time I've responded, but I've been following your blog for at least a year and a half now. I have not stopped following your blog just because things took a tragic turn for your family. I am very sorry for your loss and very inspired by all that you have done as a family and as cancer fighters.

    Sometimes I think if Ty. Sometimes, I think of your family. Thank you for sharing him and thank you for sharing yourselves with me.

    Some people can't handle the "depressing" parts of the world. Those are probably the people who will be the most needy when hardships fall on their heads, and they will understand then that you can't censor the world or choose to take some reality without the rest. We do make our realities, and perhaps it helps them sleep at night to not have to read about all the people dying needlessly, but one day they may have to come to terms with it if someone in their family or even they themselves face this kind of hardship, and you are likely one of the first people they will turn to.

    Again, I'm sorry for your loss, but I'm grateful for the perspective you've given. I wish you all the best.



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  53. Why, yes, it is sad. Horrible and sad. However, turning away from the fact that pediatric cancer exists won't make it go away. In fact, all that happens is that more kids die of it, each and every day. More awareness is needed, more funding, and more action. We've done so much for breast cancer, AIDS and many other diseases, so why not the same for the many various pediatric cancers?

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  54. Your blog does make me sad. It also makes me angry, hopeful and scared for the next child to be diagnosed with this awful disease. I read your blog because I want to know how you're doing and I am so in awe of all you are doing to make a difference and honor your sweet son.
    I think of you every time my youngest son comes to me for a good long cuddle, which is daily. In those moments I try not to think about what I would do if I lost him, but I do anyway. I'm so sorry this happened to all of you. You will forever be in my prayers.

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  55. Two words....ROCK ON! You are opening everyone's eyes to what is happening to children everywhere and fighting for a cure. If they want to live in a bubble, tell them to stop reading your blog! I for one love it...sad or not...it is what it is and has made me a better person and mother! Keep at it Cindy!

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  56. I live in NYC and while I was walking today, I saw a little boy about Ty's age wearing the same Spidey winter hat he loved. I did a double take and it made me smile. I never met you and I never met Ty, but I think of you often. I have a little boy myself and I can't imagine how it must feel to lose the most precious thing in the world. Keep up your posts, Cindy. You definitely opened my eyes to a problem that needs to be seen...

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  57. once again it's been 10 minutes trying to write something it doesn't get out before I can send it ..anyway you an amazing mom mother, advocate you would never be one of those people to turn a blind eye granted you weren't fully aware of cancer in children neither was I but now you're doing everything you can and we all are backing you we love time we love your beautiful family will do anything for you guys

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  58. For me Cindy it didn't even seem real although it is; until you hear it face to face. someone touches your heart like you and Ty Lou and Gavin have.. my family and I donate exclusively to St. Judes.. is that the best way to reach out to help?

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  59. Don't ever apologize for the way you feel or for continuing to share Ty's story. Hopefully the ones who find it too depressing will finally think, "maybe instead of being depressed, I can be inspired, I can do something to make it better." Hang in there, keep fighting, keep spreading the word, we are with you.

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  60. You have opened my eyes to the sad and horrific world of pediatric cancer. I never knew the limited treatments available for children and I never knew that treatment could actually cause them harm. People ask me if it makes me sad why do I read the blog and I have a very simple answer for them.....if I stop reading it, does it make it go away? I fell in love with your little boy through words and pictures. People have asked me how I could become so attached to someone I never met and I tell them to go on the website and just look at his smile and they will understand. I check your blog every day for an update and though most of your entries bring me to tears, I will never stop reading your journey. Ty lives on through you and that is what brings us all back here. Yes, it makes us all sad.....yes, it makes us all cry.....yes, our hearts are broken that Ty is gone.....but we will all continue to share his story and keep him in our minds and our hearts. Keep writing, keep spreading Ty's story, and scream as loud as you can.

    Jennifer

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  61. Oh how I know that feeling when people just look at you or tell you that you are crazy because you are obsessed with some child who has cancer. I have friend and relatives who think I'm nuts and tell me that I should spend my time concentrating on my two boys instead of obsessing over some child whom I never met. How could they? I started measuring my friendships based on their response to Ty story. It may sound crazy but I do. I know see people either as compassionate or simply put as assholes. I'm sorry if that hurts anyone feelings but any mom who isn't interested to hear that they're are sick kids and they need to be aware is not a compassionate person in my eyes. Sadly I have so many people like that around me people are used to think are normal and I don't anymore. Well I'm not the same and thank you Cindy for that. I can't go on normally knowing about kids dying from cancer. How can I ever be normal again when my favorite beautiful boy Ty died from cancer. I will continue to talk I will continue to spread his story in hopes that we all u deist and that it could happen to anyone but most of all that we don't loose anymore babies. Ty, to you personally I want to say that I am ashamed if people do t care but I promise you that is because they never laid their eyes on you. If only they could have seen you once for a second their life would change. I love you and miss you and I promise to never ever stop caring and loving you and sharing your journey.

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  62. toghether we can give hope to children like Ty. Cindy you have been the best insperation to me as a mom as a person. You have shared your son with us to help with a cure and you have also changed the way people are in this crazy world we live in. I thank you for sharing this blog and sharing your sons story. It is the best thing that has happened to me, yes very sad but it has opened my eyes to things around me. For those who say reading this blog is to much for them or asking why people like myself read this blog they will never understand. Cindy keep up your work keep making a difference.We all love you very much.

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  63. People ask why do we read this blog. A very simple answer we CARE!!! we want to help make a change!! We love children!!
    I wouldnt want to do anything else.

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  64. LOVE YOU CINDY!!!!! LOVE YOU TY!!!!!!
    Toghether we can make a change!!!!!

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  65. Cindy, You have changed my life.. sad or not, I read because you are so special!. I donate to a cause I never did which I hate to just admit (A CAUSE) really? Saving babies should be all our nature.. I will try to help all I can. .. wartior mommy.

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  66. I think about your love story. Journey, Faitthfully makes me think if you guys. Hang in there mommy, Ty is always there.

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  67. Cindy, I have heard about how special you are for about twenty years. I say this on your blog comments for all to read because you are just so special. Our mutual friend has ranted and raved about you for years stating how special you were. It wasnt lost on me. :) You are the most amazing Mom and person :) I think about Ty often. :)

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  68. what else can we do?? is it easier to donate to the foundation or something else. I hate feeling helpless as you do.

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  69. I have been feeling so frustrated with my Facebook friends for this exact reason!!! I can share a funny e-card picture and get a ton of "likes and shares" but when I share things about Ty and other children in similar circumstances....I get a couple of likes and not a single share!! I want to put a status that screams at these people and ask WHY!!! I will bring Ty up in conversation and ask if they have read the blog and they say things just like you stated above! These are my friends and family and I just want to smack them upside the head! I just don't get it! But it won't stop me from sharing these stories! :)

    Sharing and praying in Nebraska!
    The Stewart Family
    P.S. Have you heard the song "Save A Place For Me" by Matthew West? A friend shared the YouTube video with me for my cousin who died from complications with Leukemia last summer but I also instantly thought of you!!

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  70. What you are doing is creating awareness of this awful awful disease that seems to be getting little or no attention because some people prefer to keep their heads in the sand. I wish I was reading a happy story on your blog and smiling that you had a wonderful weekend with Ty instead of reading about how awful it is without him and crying with empathy at what you are going through. But this is not a fun story and for that reason it needs to be told, we need to honor Ty and all the little kids that should be with their families. We need to have awareness and there needs to be change in treatment. You are creating this awareness through your blog and your foundation and the news is spreading. My husband sometimes asks why I read sad stories, it's not because I want to be sad, it actually makes me motivated and educates me. These stories save lives, such as the story of an 11 year old boy near where I live in Queens that died of Sepsis last year, I had never heard of it, but because of his parents keeping his memory alive and educating people, lives have already been saved, because people are now aware of it. When the tragedy of Newtown happened I could have turned the tv off for the week, but I thought that was the wrong thing to do, ignore what happened and not be affected by all those little innocent faces and their teachers, they needed to be honored, we needed to know what happened, we need to support gun control because of this. In the same way Cindy, we are not going to forget Ty no matter how sad it makes us when we read your blog, because of course, everyone prefers the happy story. I have a 23 month old little boy and a 5 year old girl, I pray they will be healthy and live a long happy life, but I would fight for them in the same way you fight for Ty and change in pediatric cancer treatment if I was in the same situation. Keep up the great work, there are alot of people behind you and a little angel on your shoulder as you do it.

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  71. What can we do to help?

    Love, Love, Love

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  72. I won't lie, I've gotten the same, "but it's too sad" response when sharing your blog, talking about Ty. etc. Actually, I've been trying my hardest to get people involved and I've had almost zero response. It's really frustrating to me. The way I see it, is...yes, it is sad. The saddest thing in the world. I've cried multiple times thinking about Ty, thinking of my own currently healthy children, and reading your blog. But, I KNOW that this could happen to any of us. And I would rather FIGHT this horrible thing than to sit by and just hope that it never touches one of my own. I can't just ignore it and pretend it doesn't exist, when it does. So, kudos to all of you joining the fight and kudos to YOU, Cindy, for standing up against the thing that stole your son away. I know that Ty would be...no, Ty IS....very proud of you. You may not have been able to save Ty in time, but you're working your hardest to save others. You're my hero!

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  73. Cindy, I am so grateful for your blog. While the topic is heartbreaking, the awarness you bring is nothing short of amazing. I believe from the bottom of my heart that the movement that you and some of the other parents are starting will bring awareness and funding.

    Additionally you inspire me to be a better mother, to not take for granted the smallest joys in my young sons life.

    Thank you for continuing to share Ty's journey.

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  74. I feel like i was one of those people, someone who had read your first blog entry and then assumed "Ty will be fine" kids don't die from cancer. So naive and idealistic of me. As a religious follower of your blog, now I see. You have opened my eyes and I find myself educating everyone I can about Ty and childhood cancer. Thank you for that.

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  75. Cindy,

    Your blog is too sad but I can't turn away from the beauty of your love for Ty and your bravery in not only continuing to fight while you wait to see him again, but also your bravery in sharing your deepest and darkest insights. You have inspired many of your readers to action now and in the future.

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  76. Hi Cindy, I have heard it all, too. Why do you keep posting such sad things on Facebook...you should stop reading the blog because you will get too depressed, etc... But as much as I cry my heart and eyes out every time I read your blog, I cannot stay away from it! Ty is TOO big, TOO special, TOO unforgettable (even though I never had the honor to meet him). I feel like I really do know Ty. I tell Ty I love him when I see his picture on my shelf or when I see his posts on Facebook. He has touched me in ways I can't explain. He has made me a better person, a better mother...and yes, it is VERY sad! BUT BUT BUT...if we let the sadness hinder the work that needs to be done so that Cancer stops claiming our children, then we let Cancer win...and that's just NOT acceptable. Take the sadness, the depression, and channel it into positive energy. Cindy, call on me for anything! I am here for you to the best of my ability to help you battle cancer and raise awareness. I am sorry for you each and every day of my life and wish I could give you Ty back. But what I can do is help you whenever you call on me so that no more Tys are stolen from their mothers by cancer! Hang in there Cindy. You are brave and strong beyond comprehension. You are a true inspiration and I know that you will accomplish all your goals because of your strength and the love and support of everyone around you! Thanks for sharing your raw emotions! Don't let anyone stop you! xoxoxoxo
    ~Monica

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  77. Cindy, I must admit when I tell your story people are sympathetic but some seem to kind of shut down. I think part of it is that the thought of something happening to their kids the way it happened to Ty and continues to happen to so many children is too horrible to imagine. Your pain is so raw and is the worse thing that any parent could go through. It evokes a sort of " God forbid" from most people. Your strength and unimaginable drive to go forward is nothing short of courageous faith, hope and determination. My prayers are with you always for more research and a cure. Most people are good. I have to believe that. Your story is sad but mostly inspiring. It is truly a love story of the purest kind, and for what it is worth, I for one am proud of you.

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  78. Here is a fundraising idea...let's ask all of our friends that feel Ty's story is too sad to put a quarter in a jar every time they click on a story about a celebrity "baby bump" or a spoiled rich athlete behaving badly. Pediatric cancer cured!!!!

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  79. I'm sorry that you have to take on the burden of other's ignorant comments. Keep educating! I have an older brother who had a brain tumor back in 1969. We were lucky as it was benign. The Doc states that he has learned so much and the field has grown so much but needs to keep growing. You are doing a great thing. I'm sorry you had to lost Ty. He is always with you and would be SO proud of his momma.

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  80. Unfortunately my sister is one of those people who think like that. She doesn't understand why I read blogs about children who have cancer, or have died from cancer; she thinks it's too 'morbid'. But it's not morbid at all. It's awareness, and perspective, and having the capacity and compassion to love people you've never met. Learning, and reading about Ty, Ronan, Violet, Wyatt, Sammie, Phoebe, and too many others has definitely made me a better person. I'm so, so so sorry that Ty died.

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  81. I came across Dr Joanne through reading Rockstar Ronan's blog. Please read her Feb 23 blog entry. It couldn't be more applicable.

    http://drjoanne.blogspot.com/

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  82. Keep fighting this fight,Cindy. We are behind you and care very much about improving care and treatment of pediatric cancer. My life has forever been changed by your Ty, your words in this blog. Ignorance is bliss. To all the people who say it's too sad or depressing to read your blog, I say, I hope you never find yourself in Cindy's shoes. Chances are you would be writing your own heartbreaking blog. Your life too would be consumed with everything cancer. Wake up people! Wake up moms!! Let's fight for our children. We never know what tomorrow brings in our own lives. Let's all pitch in and be the voice of these innocent babies who's lives are forever changed by this horrific disease. I pray for a cure. I pray for better treatment options. I pray for all of the children and their families who walk this walk. God bless you Cindy,Lou and Gavin. Superty Forever<3

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  83. I have been reading your blog and praying for your family for a very long time. And then I found out that we have a mutual friend...Barbara Lindvall. I just thought I would share that my son Peter raises $1115 for St. Baldrick's and shaved his ead today in memory of your beautiful little boy.

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  84. I know this if off topic but I'm looking into starting my own weblog and was wondering what all is needed to get setup? I'm assuming having a blog like yours would cost a pretty penny?

    I'm not very web smart so I'm not 100% sure. Any suggestions or advice would be greatly appreciated. Kudos

    Here is my weblog :: coupons for diapers

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  85. I've been reading your blog for some time now and I think you and Lou are the most amazing and loving parents. I haven't discussed Ty with many people because I too thought they would be put off by the sadness. But after reading this post, rest assured that you are making a change. As I walked the beach with two friends this morning (one an oncology nurse) I told they about Ty and about your efforts on behalf of all children with cancer.
    And so a movement grows . . . There are now at least three women in RI paying attention, spreading the word, and raising awareness.

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  86. Cindy..you are one of the strongest people I have come across...who cares what anyone has to say...just tell them yes it is depressing to me that my baby is not here...see how they like that thrown in their faces. You keep pouring out your heart to anyone who will listen. I think of your sweet boy everyday and what you all went thru...Keep strong and keep writing!!! xoxo

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  87. Unfortunately most people turn a blind eye to this evil diseasethat is killing innocent children because they are in denial, unless of course it happens to their child. Cindy my 2 1/2 year old daughter, Tori saw me reading this blog. We have educated her as much as possible for a 2 year old to understand about Ty and how God took him to heaven far too soon. When she saw his face on the screen she said, "Mommy Super Ty is really Callie's age." I said what do you mean (Callie is her playmate, 2 years and 10 months)? She said Super Ty is still Callies age in heaven. It sent chills down my spine. Perhaps its true that children are so innocent they can see angels and she can see him as a happy little boy before cancer. Xoxo

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  88. Your telling of Ty's story has made me a better person, more aware, more empathic, and a better mom too. Thank you. It is so unfair that Ty is gone and that pediatric cancer takes innocent precious lives like his everyday. What you do is very important. You rock at keeping Ty´s spirit alive!

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  89. Cindy--You are dead on. Yes, the topic of a child battling cancer is sad. However, when I think of words to describe your BLOG, I go to: Raw, honest, no-holds-barred, educational, inspiring, eye-opening. Your blog has moved me to act and feel in ways I never would have for not reading it, for not hearing Ty's story before and after his life here on this earth. Your words, Ty's life, death and everything after have moved me to action--not an easy feat. I thought I knew what in this life I cared about, wanted to donate my time, energy, mindspace and conversations to. But you added to that--you and Ty ENHANCED that. Nothing but good things to say about you and blog.

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