Sunday, July 7, 2013

Max, Mckenna and Talia Joy

I have been offline for over a week!  Sorry I’ve been so out of touch but it has been so busy - with both work and with the long holiday weekend – I just haven’t been able to write.  Nor have I been inspired to write about anything in particular until today. 

A couple of days ago, I heard the terribly sad news about Talia Joy Castellano.  She probably won’t be with us much longer.  She is a light and a love and a beautiful soul.  She has fought Neuroblastoma for more than six years, and I have been following her fight for years.  She created a You-Tube channel where she bravely sits in front of her web cam and forces viewers to see past her bald head and instead fall in love with her energy, her spirit, her sense of humor and her incredible talent as a make-up artist.  She has been an inspiration to thousands of other young girls fighting cancer, and she even appeared on Ellen with the grace, dignity and maturity of a grown woman.  She is only 13 years old and she isn’t all that much bigger than Gavin as a result of all the treatment she has endured over the past six years.  But her tiny size is irrelevant when considering how incredibly big her heart is.  Where does she fit it all?   Please pray for her. 

You all know that childhood cancer is completely different than adult cancer.  Most often, it cannot be attributed to environmental factors that hurt the body over time.  Nor is it something that tends to “run in the family.”  It happens completely at random and spares no age, race, geography or socioeconomic group.  Most adult cancers occur in the lining of the organs and it can be theorized that toxins are a factor (i.e. the lining of the milk ducts in the breast, the lining of the colon, the lining of the lungs) therefore cancer in adults usually occurs from environmental exposures to these cells over time.  On the contrary, childhood cancers often occur or begin in the stem cells, which are simple cells capable of producing other types of specialized cells that the body needs. A sporadic (occurs by chance) cell change or mutation is usually what causes childhood cancer (ref: cancer.stamford.edu).  Cancer is the devil, regardless of whether the victim is young or old… my only reason for explaining the difference between childhood cancer and adult cancer is to support my battle cry for better research that is specifically geared toward treating children.  To stop using adult hand-me-down treatments at higher doses.  They are very different and should be treated differently. 

My reason for pointing out how random childhood cancer is isn’t to scare you – NOT AT ALL.  It is because I want to make the point that even though it is so random, all the little fighters I have gotten to know are the most beautiful, courageous and inspiring children in the world.  I don’t believe that God “gives you what you can handle,” and I don’t believe for one second that God chooses to give any innocent child cancer.  But I do believe that cancers littlest victims share one very distinct similarity and that is pure beauty.  They are beautiful souls, inside and out, and their eyes show a sense of knowing and maturity that many will never achieve. 

I am not alone in knowing that kids who battle cancer are so incredibly strong and simply better than most, and I am so grateful for the other cancer moms who have found me after learning about Ty.  Mckenna’s mom is one of those wonderful people who I now call my friend (www.mckennaclairefoundation.org).  As is Max’s mom (www.givemaxlove.org). In the midst of their own pain they have reached out to me with kindness, comfort and understanding.  Both families live on the West Coast but I was lucky enough to meet up with Mckenna’s Mom during my recent trip to San Diego.  Mckenna suffered from DIPG – a children’s brain tumor that is always terminal. July is a very difficult time for her family, having lost Mckenna at this time in 2011, and because Mckenna’s birthday is in August, yet her family still hosted an incredible fundraiser for the Mckenna Claire Foundation for childhood cancer research over the holiday weekend, and they had a huge float dedicated to all the cancer warriors – they even included a photo of Ty among all the wonderful fighters honored.  They are just such a wonderful family. 

Then, just last week Max chose to travel to New York City for his Make-a-Wish trip and I had the privilege of finally meeting him and his family and giving them real-life, in-person hugs, as well.  We took the kids to the museum of natural history (where Gavin and Max were instant friends), we enjoyed a wonderful lunch, hit the toy store and then let the kids blow off steam at the playground until dinner time.  It was one of my favorite days in a very long time. 


I fell in love with Max the second I saw his beautiful picture.  Max is just like Ty, so much so that when I finally saw him in person I would tear up often when watching him play and even more so when hearing his voice.  I am so filled with hope for him.  He is living with a brain tumor and he is doing well, thank God.  But for the rest of his life his parents have no choice but to hope and pray for a better, more effective alternative in treatment.  And as they wait, they have to cross their fingers and hope and pray that his tumor otherwise remains stable.  But Max’s Mom and Dad have vowed to do more than sit and wait.  They are passionate about helping other children with cancer, and about raising money for childhood cancer research.  Rather than wait for a doctor to tell them what else they can do in the meantime, they choose to proactively explore alternative options for Max through anti-cancer foods and nutrition, and they openly share what they have learned with other cancer families through their “thrive against cancer” campaign.  They approach their fundraising with collaboration in mind, not competition.  They share my thoughts about having a stronger voice and making a bigger impact if we openly share information and ideas, if we support one another’s initiatives, and if we combine resources and knowledge to help other childhood cancer foundations make the very best decisions when investing.  Max’s mom is one of the “46 Mommas that Shave for the Brave” and I think that is totally badass. 

Max has magic in his eyes and when he speaks to me I can close my eyes and imagine those words are coming out of Ty’s mouth.  Not only does Max look so much like Ty, but to watch another little boy who is living with neurological defects and who DEFIES them without a second thought forces the biggest, most painful and fearful smile across my face.  I smile big because it truly makes me happy to see Max tackle the climbing wall on the playground even though it is so challenging for him and he has to try so hard.  And I hurt because he reminds me of how Ty might still be here overcoming the same challenges if only his cancer didn’t come back so soon.  And I’m paralyzed with fear because I am scared that change isn’t happening fast enough, and the pressure of seeing Max and knowing the sheer uncertainty of his future makes my heart palpitate and my head swim in the helplessness all over again.   Why does research take so long?  And when there are promising medical breakthroughs, why does it take so long to make those options available to families like Max’s?  Something has to change.  My hope prevails!!!! :)

I just have to keep reminding myself that we are not helpless.  And that we are making baby steps every day that I walk into the TLC office.  I am so hopeful knowing that Max’s family and McKenna’s family, among so many other powerhouse families, are joining hands and fighting the fight right alongside one another.   All of you who continue to read this blog and to support Ty’s foundation for so long… I know we ask for a lot from this incredible community and we are just so grateful.  I wrote about Talia and Mckenna tonight to remind you of how tragic this reality is, and I shared Max with you so you can see why our efforts to continue fighting for our children is far from hopeless.  That there are so many children whose lives depend on what we are doing, and we couldn’t do it without your unwavering love and support.   Please continue to support childhood cancer awareness by sharing Ty’s story.  Thank you. 


16 comments:

  1. I share Ty's story with anyone who will listen. :)

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  3. I continue to share Ty with everyone I know. Things may seem hopeless at times, but you and Ty are making such a big difference!

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  4. So well written my friend as usual!!! Kelly

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  5. I love to share Ty's story. I well up every time I mention him and Eddie was proud to show me today that he was wearing his Superty shirt (even thought we both wear them quite a lot!!) Love to the Campbells.
    Shawna
    Millbrook, NY

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  6. When I discovered Talia I had such a hard time reconciling this incredibly spirited girl with the idea of cancer. That she looked cancer in the face and defied it's impact. That as a young girl still growing in to herself, that she put herself out there to share her story and her passion for make-up - damn the haters and their idea of beauty. She really is a most beautiful soul, that at 13 she has more grace and charm then most adults I know - she is a light and an inspiration. It breaks my heart to know her time here on earth is short. Again, like with Ty, I am faced with trying to understand why. But thank you for your explanation - it helps make me understand better.
    Getting to know Ty has made me a better person, opened my eyes and my heart to all these warriors. Taught me so much about kindness and compassion - lessons I took too long to learn but will now never forget.
    I send love and strength to the Campbell's - to the Wilford's - to the Castellano's. I Stand Up for all of you as we fight for better awareness and better funding for research.

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  7. Thank you! So well written and informative too (and of course emotionally heartfelt). I had cancer a few years ago and I would never compare my situation with Ty, so I love that you explained the differences as well as continue to highlight the bravery of Ty and all the beautiful children fighting so hard. You are so right, there is a big difference and I am glad to know the reasons for it and the great need there is for this type of research. You guys are incredible!! We love Ty here and appreciate all you guys do for him and all our kids.

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  8. Cindy, I went o Miles for Hope to donate. Is the site down? :(

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  9. Beautiful Cindy, thank you for your relentless love and tireless fight. Your words had us in tears all morning. You give us hope. I'm amazed, always. For Ty, McKenna, and Max. <3

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  10. Wow how sad it is that cancer unites you. Ty was so missed in the picture that you took with the family of Max. He should have been there. He was taken way too fast. Sadness is never ending when I think of your beautiful boy. Miss you so much. I am sure more should have been done by the world for you.

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  11. I'm so sad to hear about Talia. I love watching her on youtube and following her on instagram. God Bless all these beautiful children! My family will be at the Muddy Puddles "Mess Fest". I have been following this blog for over a year and your story has changed me for the better. <3 Can't wait to take part in all the fun next month!!

    -Desiree P. Somers, NY

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  12. Cindy,
    I read your blog daily and look forward to new posts!! You are an inspiration and what you do with the foundation is absolutely amazing!! I think of Ty all the time and I just wanted to let you know that I am participating in the Merrell Down and Dirty Mud Run in September and I am doing it in honor of Ty. Even as an adult, I want to jump in a muddy puddle!! I want to set up a link to raise money for your foundation. Is there a direct link that I can use? Looking forward to jumping in a BIG muddy puddle for Ty!!

    Elisa Kolb, LI, NY

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  13. So sad. Thalia is beautiful and inspiring.

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  14. Elisa, go to crowdrise.com and search for the foundation. Then click on "fundraise for this charity". I'm doing the same for a half marathon :)

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  15. Cindy,
    Thank you for bringing awareness to be about Talia. I think that is a huge benefit of your blog - you bring awareness to the unaware. I started following her story, watching her interviews - WHAT a special and wonderful girl she is! Wow... People all over the country are checking off her bucket list for her. It is so motivating and inspiring to see. Somedays, it feels like there is not much good in the world, but this movement has proved otherwise.
    Thank you for all you do,
    Beckee

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  16. Talia earned her wings at 11:22am this morning. Another sweet soul gone from this world way too soon.

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