We're at the end of September and the end of Childhood Cancer Awareness Month. I fear, we may also be nearing the end of the remarkable journey of 'Super Ty' and his incredible family.
Normally, I would never write about this. It's beyond painful and agonizingly private. But this is one of the many miracles and super-human traits of the Campbell family, particularly Ty's mom, Cindy, who appears to be the strongest mom alive.
Ty's mom has been faithfully chronicling her son's brave battle against a rare, aggressive brain cancer since he was diagnosed. In her inspiring blog she calls Ty Louis Campbell: Our Little Fighter! she chronicles the daily heartbreaks and inspirations of parenting a child with a life-threatening illness, who also has a spirit and determination to live that remains unbroken. During this unimaginable struggle, she has told the story of one family's journey from diagnosis, through endless surgeries and treatments, false starts, last rites, miraculous recoveries, clean MRI scans and relapses. Through it all, she has been her son's fiercest advocate and an amazingly articulate guide for the rest of us through the unfathomable hell that is parenting a child through cancer.
Nothing more can be done
In the process, she has developed thousands of supporters from around the country, who are now raising their voices in a prayer chain on behalf of Ty and his family. Ty's parents have been told the unthinkable by the doctors. It's almost time. It's almost over. There is nothing more to be done.
Now, they've been through this before – called hospice care even – but not like this. Nothing like this.
So first and foremost, I ask you to add your voice in whatever form, to whatever form, in whatever way your faith or belief or energy works – raise your voice in love and hope and strength on behalf of Ty and his family. And send them – and all those like them, all those families living through the hell of a dying child, all the love and support and collective strength we can all muster.
I have written before about Ty Louis Campbell, one of cancer's smallest and fiercest warriors. His heartbreaking, roller coaster battle against a rare and aggressive cancer is chronicled in his mother's heroic blog, where she shares such raw emotion and truth you cannot do anything but read, weep and pray so, so hard for this complete stranger who feels like your sister – whose child feels like your own. In her blog she describes how she, husband, Lou, and Ty's younger brother, Gavin, are making their way through this horror. Please read her blog and share your support. Her writing is filled with despair, of course, but more than anything, with incredible hope, faith, perspective, humor and gratitude. She is a super-human inspiration who is entirely human.
In a recent searing blog post, 'Our Aching Hearts,' Ty's mom shared the unsharable, where she lets us into this sacred moment, opens her heart to us and allows into her heartbreaking but so clear-headed internal dialogue about what it means to let go, to deeply internalize the impossible idea that her beloved little boy is dying:
"My face is swollen. My eyes are heavy. I have been crying for what feels like an eternity. But in between my tears, I have an overwhelming sense of freedom. Today we were told that there are no more treatment options for Ty. That his MRI Saturday night shows progressive lepto-meningial disease in three different areas. Lou and I decided against surgery to fix Ty's shunt, and I am finally free from feeling responsible for whether or not he lives or dies. Ty is in God's hands.
No matter how many times I swore that I leave Ty in God's hands, I was always clinging onto him with every ounce of my being. Researching. Fighting. Begging. Doing anything in my power to find a way to save him. Finally, I have exhausted my options and I am letting go. I may be kicking and screaming, but I am still loosening my grip because I know that I have to. We have tried so hard, for so long. Ty's doctors and nurses, they are so special. They have given us beautiful. precious time with Ty and for that I am so grateful. But he has suffered so much and I just can't allow that anymore. Maybe this time is what I needed to learn and to find the ability to say "no more."
I need to make one thing very clear. Letting go does not mean giving up or losing faith or abandoning hope. I know it sounds that way but I still smile at the thought of Ty sitting up and saying something like "why are you all crying, I'm fine!" I swear to you when I tell you that I believe this is still a possibility and I'm not even sure I would be surprised after all that has happened. In fact... well... I'll save the latest updates for the end.
'I am waiting for my child to die'
There are three things happening here.... First and worst, Lou and I are grieving for the impending loss of our son. We are in unimaginable pain, and we know it is only going to get worse. I can only compare it to when I was pregnant. We were so in love and so excited for our baby, but we had no idea just HOW MUCH we would love that baby until he was born. It's crazy how your heart just explodes with something that is impossible to put into words. I realize that I am currently in a place that is the polar opposite. I am waiting for my child to die. And I am utterly devastated beyond words and I know I will be even worse off when the time comes.... but the pain of him really leaving us will be something that is incomprehensible even to us, regardless of all we have seen and suffered through already. I will forever be a fraction of myself. A walking zombie. A very, very broken person. When I try to imagine my life without him I get lost in a fog of pure grief. How am I going to do this?"
Read more about how wvery day this family beats the odds.
Parenting Kids with Cancer: Meet these heroic parents
SuperTy: The Story of a Child with Cancer and an Unstoppable Will to Live
SuperTy : Living Life to the Fullest When Your Child has 'Terminal' Cancer
