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

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. Hi Michael,I think your story is absolutely amazing and this has given me so much hope after reading your story. My daughter Sophie was diagnosed with an AT/RT at the age of 3 1/2. She had 4 months of intense Chemotherapy and 6 weeks of Radiation. She was almost cancer free at 12 months then this ugly disease returned. Thankfully it returned where they took out the previous Tumor so it didn’t spread or effect any brain tissue. She recently had surgery for the second time and is now cancer free once again. The one thing that really concerns me is that there is a very high chance of this returning as advised by her Oncologist. We live in Australia so we don’t see this Tumor her very often and I don’t think the Doctor’s know enough about this. We are now considering going to the Boston Children’s Hospital & Johns Hopkins in the States. I am wondering what type of Chemo protocol your child was on and how long was treatment for. Did she have Proton Beam Therapy etc. Your reply would be much appreciated.

  2. Hello,Our daughter Matilde had been diagnosed AT/RT cancer mid Dec 2013. She’s over 3.5 years old, so far has completed 4 chemo treatment and currently about to begin 6-weeks of radiotherapy. Although the cancer is a real bastard we believe she’ll make it thru. There are no spreads in brain, no cancer cells in cerebrospinal fluid. MRI done after 2nd chemo confirmed that tumour was fully removed during surgery. Next week we’ll have another MRI to see how it goes.She’s a real fighter, reacted very well to last two high-chemo doses, her balance co-ordination was back 3-4 weeks after surgery. We believe she’ll be another AT/RT survivor, however there’s a long way ahead. She’s treated according to european protocol, we live in Warsaw, Poland and got the best care in our country. Keep fingers crossed! Cheers, Michal

  3. Timothy,
    Thank-you for sharing your story. There is a feeling that you get when your child is diagnosed with cancer and that feeling gets worse when it is a rare one. A feeling I know all too well. My son was also diagnosed with ATRT in 2006. He has been clear since 2007. There are alot more kids out there now that are long term survivors. There are quite a few ways we all try to stay in touch with each other- we are on facebook as well as the Children’s Brain Tumor Research Foundation (Started up by a parent) I just thought that I would pass this along. That way- if someone is reading this they can become connected with us if they are just starting their journey. Here is to continued clear scans and living life to the fullest each day!

  4. the daughter of my sister has ATRT she successfully undergo brain operation 90-95% of the tumor has been removed . what is the possible chance that the 5-10% of the tumor will be removed

    • Dear James–

      Thank you for your comment and for reading Insight. Unfortunately, we cannot give out medical advice on this blog or via email. It is best to discuss these medical questions with an oncologist or care team.

      If you are interested, this site provides more information about pediatric brain tumors.

      I hope this is helpful and wish you all the best.

  5. My daughter was diagnosed with Atrt on oct,3,2013 she had complete tumor resection,2 cycles of chemotherapy,30 sessions of radiation therapy,and 3 high dose chemotherapy with stem cell rescue.She doing great and almost done with all.treatment, I have faith in god and I’m sure she will be a long term survival like many others,wish all the best and always have faith in god the doctor of doctors!!!

  6. Sorry I forgot to post my daughters age, Azul was diagnosed a week later she turned 4,now she’s going to turn 5 in september.

  7. Hi Timothy Rourke,

    How is your son doing now? This story is giving us hope.
    Need urgent updates from you.

    My daughter who is 2 years 10 months now has had a recurrence post 2nd surgery done on sept 10th,2014 followed by 2 months of chemo.
    so the doctors have told no point in going for a 3rd surgery as chemo has not worked. She received focal radiation in the month of May 2014 but that was just low dose & was given around the periphery of the brain (since her counts were down and chemo cannot be continued.)

    But we cannot leave her like this, the only option left is to go for 3rd surgery followed by craniospinal radiation.

    Wanted to know from you on couple of important points
    1)Did your son receive craniospinal radiation as a child needs to be around 3 years to undergo that?
    2) six surgeries within a span of 16 months is amazing. this is what is giving us hope to go for her 3rd surgery. How was this possible. Surgeons must have been exceptionally optimistic to take this decision. Please tel me more on surgery part.

    Awaiting your response.


  8. Hi, on 13th may 2015 my daughter had a tumor removal surgery. It was a big tumor. We had no option other than the surgery. The surgery took about 7 hours and it was successful .The good thing is that she is recovering. She can talk,eat, and walk a few steps after 6 days of the surgery.she did not lose sight,hearing or memory she is fine. Other other and, today I was informed that she is having ATRT cancer, a rare type of cancer. In our country there is no full therapy available for ATRT, we are from Qatar. Because of the lack of the therapy, now Iam making a quick research on what should be the next step in order to fight this ATRT cancer. I Was told to look at what Dana-Ferber done so far and that’s how found this blog. I know it is going to be hard to deal with ATRT cancer.please give me some directions that might help, like where to go . I hope that my daughter Reem can make a survival story. She is 2 years 9 months old. She is my love and my life.

    I hope you all be safe.

  9. My daughter was diagnosed with ATRT in October 2001. She was three years old when diagnosed. She received her treatment at St. Jude’s Children’s Research Hospital. She underwent aggressive treatment for the aggressive fast growing tumor. She is 17 years old now. She has been cancer free for 14 years. She beat the cancer when given a 19 percent of survival with treatment. Yes, this is a rare cancer with little research. I consider the children faced with this type of cancer “Miracles” when they survive.

  10. I just stumbled across this today. My daughter is also a survivor of the horrible AT/RT. She was diagnosed when she was 9 years old, and I am happy to say she just graduated from high school. The cancer and treatment left it’s brutal mark on her little body. The tumor was located on her C-spine and they had to remove her brachial plexus nerves in order to remove the tumor. She also has other significant effects from the surgeries and treatment, but she is alive and we are thankful every day for that. I am so happy your son is also a survivor. I hope he continues to do well!

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