AT/RT: How my son faced a rare cancer and beat the odds

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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.

64 thoughts on “AT/RT: How my son faced a rare cancer and beat the odds”

  1. Thank you for sharing your story of hope and courage! My grand-daughter was diagnosed with AT/RT in 2010 at 20 months old. She is now in remission and went through some of the same protocols as your son. However, cancer left its evil mark on Maddie, at 3 years old, she can’t walk, talk or see… cancer took away her sight. WE are praying that with aggressive therapy she will learn to walk and talk again. My prayers continue for all children who have to battle this horrible disease. NEVER GIVE UP!

    • My daughter was diagnosed oct 2009. She also lost her mobility, speech, co ordination and hearing. Today she is walking alone most of the time, she is still off balance but its coming back slowly but truly. She has a walker which strengthened her alot but now she rarely uses it as we want to push her to walk alone. She falls alot but gets up and continues. Therapy and pushing her to walk, worked for Nora. As you said We don’t give up!

      • Hey, my son is 2 years n 6 months diagnosed with this same aggressive tumor. Doctors as of this afternoon told me there is no chance of him making it and survival just isn’t for him. He has been hospitalized for most 2 months now and has been through so much pain n tubes and surgeries. On Friday he’s getting a permanent breathing tube. Am so scared of putting him through so much aggressive things and tubes when he really doesn’t have a chance at life again. He also can’t speak eat or walk or even sit up all he does is a little bit if movements with his hands and legs. I would like to know more about ur child’s tumor if possible.

  2. Thank you so much for sharing your son’s story. Our daughter is 6 months post treatment for AT/RT. It’s hard to find the stories of the long-term survivors but it’s these very stories that help give the rest of us hope.

    • Jodi, thank you for commenting. It makes it possible for me to find other ATRT families. How is your daughter? Do you have a blog or website where I can read about her journey?

  3. Our Granddaughter is also a fighter of AT/RT. She was diagnosed at 8 months and now almost 2 years latter she too is free of this monster. Everyone needs to keep up hope and prayers!

  4. From Holland,

    Our son (becomes 22-6-12 8 year) was 4 when it appears that hè had a AT/RT tumor. After 2 operations, chemokuur and radiation by protontherapy in Villigen (Zwitserland) he is now free of cancer.

    He has damage (20% sight and a drunk walk) but he is happy.

    We hope for other people to know That there is hope.

    Jan Priem
    janpriem@gmail.com
    Google for Job Priem to see what happens with Job

  5. Hi just wanted to share with everyone that we too are going thru this battle. My grandson has AT/RT cancer in the brain. His name is Hayden and he is now 15 months of age. Last month he had brain surgery and there remains 10% of this tumor in his brain stem. He has started chemo two weeks ago and they went with a very aggressive chemo as the cancer is aggressive. He was going thru this like a champ when suddenly he came down with a blood infection. Thank God I got him here on time they said. He has Ecoli. So I am now looking at him as he is in a paralyitic state being fed multiple antibiotics in ICU, watching him pull thru this And Praising God! Chemo is delayed for a little but they will resume again. Thank you for the story of survival and this I say to every parent/gandparent, God be with everyone of you and give you the strength that I have asked him for and recieved. If you would like to follow haydens story and leave a prayer his page is on facebook and you go to Hayden’s Miracle. God bless you.

  6. Hi,

    My daughter had ATRT in the brain in 2001, at the age of 16 months old. She had surgery, chemo (Long Island Jewish Hospital- Dr. Mark Atlas, and focal radiation ( Massachusetts General Hospital- Dr. Nancy Tarbel).
    She has been cancer free over 10 years, you can see her on youtube just type in her name ” Julia Roessner”.

    Thanks and good luck to all

  7. I have hope for everyone out there battling AT/RT – our daughter Emma was diagnosed at 12 months in 2000 with AT/RT – she is now 13, in 8th grade and apart from a few side affects (small tremors) controlled with anti-seizure meds she is cancer free and has been for 12 years. Emma is a patient of Dana Farber, Dr Kieran and his dedicated team…they know her well ! There is hope for anyone going through this disease and there is light at the end of the tunnel…I just wanted to post this to let people out there know that there are long term survivors that continue to do well – life is good xxx

  8. one of my twins Amelie (2 years old) has AT/RT. Are there any long term survivors with germiline mutation?

      • Hello, I am not quite sure if my english is good enough for an appointment.. Amelie is fine at the moment and I studied some of the different protocols which exist. Amelie had her operation Jan.12 and they could remove all. She has done the treatment (EURHAB2010)with DOX, VCA, ICE incl. proton radiation. Since Sept. 12 we do a maintainance therapy with Temozolomid. The summer I try to get a treatment with dentretic cells (open if I can manage) Amelie manage to drink energy drinks but she cannot “bite and swallow” very good and everythink taste horrible … a 2 year old girl cannot give you a 100% answer.. so we think it is all: no taste, not hungry, it hurts when she swallows.. but she can keep her weight and hopefully we can manage to put weight on when the maintainance therapy is over. Amelie enjoys live and is fantastic girl. I try to find a lot of information about survivors… but I did not find if there a any who have a germiline mutation. So this is my question – do you know are there any long (really long) term survivors with a germiline mutation? I hope and try to be strong everyday but it is so difficult when you read all the time about the “AT/RT” Angels..

        • Dear Bettina, I am so sorry to hear about Amelie, but glad to hear she is getting through treatment. My 5yo son has ATRT and we are about to have stem cell transplant. There are published long term survivors who have germline mutation, though only a few. See this paper:
          http://clincancerres.aacrjournals.org/content/17/1/31.full.pdf
          It is difficult reading, but the important message is that while germline patients did worse this appeared to be because they were younger and so could not have the most effective treatment. It sounds as though Amelie is having the most effective treatment known (except maybe stem cell transplant?).
          Tell me more about dendritic cell treatment? Is this a cancer vaccine? How do you access it?
          You may wish to join the ATRT brain and spine cancer support group on facebook group, it is really helpful.
          Best wishes,
          Jackie

          • Hello, sorry that my answer is soooo late – yes I join the AT/RT Forum in Facebook – may be you found me. Amelie is fine. We have finished maintanaince in July 13 and started vaccine with dentritic cells today. This is a Kind of immuntherapy

  9. Hi from Germany, THANK YOU soooo much for spreading your little fighter’s story. It gives hope and a perspective that this nightmare can have a positive ending! Our daughter finished her 9 months treatment last Friday. She was 18 months old when we found out that she had a tumor at her spine, cells in the liquor and a metastasis in her brain. Her treatment contained 6 chemotherapies, two high dose chemotherapies with stem cell rescue as well as 6 weeks of radiation. She has been NED since September 🙂 and she is an active and happy child. She lost a bit of her hearing ability and has to wear hearing aids, but if that’s the only sign left, we will be very very happy. We hope and pray that our little sunshine, too, will remain NED! All the best to your family, especially Declan, and to all the little fighter’s – KICK ATRT’S BUTT! Love Brita

    • Hallo,
      I am also from Germany – always afraid to asked – or afraid of the answer… how is your daughter? Umarmung, Bettina

      • Hello Bettina,
        sorry for writing so late… I simply forgot my post here…
        Our daughter is doing great. All MRIs were clear so far. She loves kindergarten, the hair has grown back, she has grown 10cm in a year. She is a normal child who laughs a lot, loves animals and teases us parents 😉
        We really hope that she completely beat the monster, but we are very positive – as well as our doctors!
        What about your little one?

        Love and a hug

        Brita

  10. Hi Tim,

    Thank you for the story and for the message of hope for this terrible diciase.
    My goddaughter has recently been diagnosed with ATRT and the family is weighing all options to try to figure out what to do. Would you happen to know if there are any clinical trials for ATRT at this time?

    Thanks, Juan

    • Juan, Dana Farber is currently beginning a clinical trial, although I think its focus is on a treatment regimen for relapsed ATRT patients. Contact the Pediatric Brain Tumor Clinic at Dana Farber for info: 1-888-733-4662.

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