Medically reviewed by Mark W. Kieran, MD, PhD, Anupama Narla, MD, and Susan N. Chi, MD
Most parents treasure the big moments in a child’s life: first steps, first word, first day of school. I, on the other hand, treasure every moment with my son, Declan – the simple act of eating breakfast together, watching him do his homework, or taking him to ice-skating lessons. This is because Declan is a cancer survivor.
It’s hard enough to learn your child has cancer. One minute your world seems fine, and the next, you’re falling into chaos and fear. But when my wife and I got the news, after Declan had a seizure on Father’s Day 2006, we had the added distinction of a cancer diagnosis so rare that only 30 or so families receive it every year.
Declan, then 15 months old, had an atypical teratoid rhabdoid tumor (AT/RT), a rare cancer that affects the brain and central nervous system. At the time of his diagnosis, researchers could count on one hand the number of long-term survivors. Like a lottery nobody wants to win, we suddenly found ourselves in a category of cancer so small, so remote, that it was easy to think there would be no place for us to turn.
The New Hampshire oncologist who diagnosed our son saw a different picture.
“I have no ego when it comes to kids,” he said. “If the best treatment for their cancer is in France, I send them to France. If it’s in Germany, I send them to Germany. It just so happens that, for your son, the best treatment is just 45 minutes away at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.”
With those words came hope for beating a disease that had inflicted so few, and yet taken so many.
Declan immediately began a year-and-a-half of treatment under the care of Dr. Mark Kieran, Susan N. Chi, MD, and Dr. Anupama Narla at Dana-Farber/Boston Children’s. The regimen was brutal: 52-plus weeks of high-dose chemotherapy, six weeks of radiation, and half a dozen surgeries at Boston Children’s Hospital, where surgeons work in partnership with Dana-Farber oncologists. There were feeding tubes, ports in his chest and head, and more blood and platelet transfusions than I can count.
And yet, our family was emboldened by the courage of a group of specialists that dedicated time – and resources – to such a rare disease. And we found comfort in the knowledge that although there were so few cases of atypical teratoid rhabdoid tumor a year, this team had the expertise to give Declan the best possible care.
As I type these words, my son – now seven – sleeps peacefully in his bed. He has been out of treatment since October 2007, and currently shows no evidence of disease, according to his doctors. As of today, he is one of the only long-term AT/RT cancer survivors in the world.
A world turned upside down is once again right side up. Of course, we dread every check-up and MRI scan that brings a threat of relapse. That’s one downside of being the rarest of the rare; survivorship cannot be taken for granted. We meet other AT/RT families who shared our hope for a cure that, for them, proved elusive.
Tomorrow the sun will rise. My son will open his eyes and greet the day. I’ll find him near his 6-month-old sister’s crib, where she will glance his way, hear his voice, and squeal with glee.
To most parents, the sight would be sweet. But I am not most parents. I am the parent of a cancer survivor. The moment will blind me with its beauty, and bring tears to a man who knows how lucky he is.
Timothy Rourke is a member of the Pediatric Patient and Family Advisory Council at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
This was so beautiful. I have tears in my eyes and lots of joy in my heart. Even though I have never met Declan I am so very proud of him for being the fighter that he is and surviving. There isnt a day that goes by that I dont wish we all lived closer to one another. Thank you Tym for sharing your story and your struggles. Declan,rock on little buddy!!!!!!!!! Love Cousin Kristina
Wow Tym! Mel said it best…you are an incredible writer. This just brought tears to my eyes and filled my heart with all the love that a parent has for their/our children. We should all feel so blessed every day. Thank you for sharing this!
Hey! Ia have a son with at/rt we are just after surgery know. This week we are starting chemo.programm is about 72 weeks of terapy. Do You have any tips for us?
Dear Robert,
I too have a son with ATRT and going through treatment. He has completed the first phases of his chemotherapy and currently doing radiation. He will then undergo mega therapy which is a high dose chemo therapy that I am scared out of my mind to put him through.
Please contact me at leislmales@hotmail.com
I would very much like to talk to another going through the same thing.
Leisl
I had to respond to this amazingly beautiful article. As a parent with 3 children, 2 of whom have special needs…I know what it is like to savor every moment & how the smallest accomplishments are absolutely huge & unforgettable. Cannot imagine having a child with a diagnosis like Declan’s…but when you are put in that kind of a position you do everything you need to do & pray that G-d is watching over you. It is a true miracle & he is here today because he is a true lesson in humanity & an example of perseverance, great medical care, loving family, and G-d blessing this little boy. We pray that things continue to go well for Declan. His Dad’s story is so beautiful, poignant & heartfelt. I live in Florida now, but lived in Holliston, Mass for 4 years years ago. I know very well how wonderful the health care is in Boston. Dana-Farber is the best & has saved the lives of many of my family & friends. G-d Bless Declan & his truly special family.
Thank you for sharing your inspirational story. It truly gives other hope. K
Your family’s happiness brings such happiness to me- and your eloquence always moves me. Thanks for sharing your thoughts-
My daughter has atrt n brings u hope readin dis amazin article we be travellin 2 dis amazin hospital
This is something my family is going to be hoping for, my niece Hartlee was diagnosed January 20th with the same AT/RT tumor and underwent treatment on the 23rd to remove it. We were told on the 20th of April it is now surrounding her brain and they are giving her less than 10% chance of survival. We are going to be looking into this hospital now. You can see her story at wwwfacebook.com/HopeforHartlee
Thank you for your comment Tory. To talk to one of our new patient coordinators or for more information about our program, please call 1-888-PEDIONC (733-4662) or email pedibraintumor@dfci.harvard.edu. We wish Hartlee and your family all the best!
Your story brought tears to my eyes as I just recently lost my 2 yr old son Ayden to this cancer. My son’s 11 month brutal journey ended due to complications to chemo.
Gold bless your family and praying for all who are currently fighting.
Carepages.com. Type supportame in the search field to read about my son ayden Michael edelaberg’s journey.
Beautiful story with a very happy ending. My son is 9 months post treatment for AT/RT. I wish with all my heart that we, too, can say that he is a long-term survivor. Much love to your family.
My daughter, Zoe, is about halfway through the protocol. How is your son doing?