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. What a long battle it was for us also… My grandson was diagnosed at 14 months with at/rt. He started his treatment after 2surgeries and 1shunt. He finished at 2years old 7 months. He just turned 6this month. He is the mayor of his school. We do go for MRI yearly with one coming up next month. Very scary feeling. We owe it all to the Doctors at Hasbo children’s Hospital. And the TOMORROW FUND CLINIC he also had proton radiation in Boston. To anyone that has to go through this, you have to keep the faith and put all your trust in your doctors.. And most of all write a journal everyday. Take plenty of pictures because its an amazing 15 months. God bless to all that have to go through this horrible journey.

  2. My daughter Nora is an ATRT survivor. She has been in remission for the last three years. She also was diagnosed at a very young age like Declan, she was only 18 months. We were on the verge of losing her after high dose chemo but she is a fighter and she survived. After high dose she got encephalitis due to radio therapy, it took her mobility away, speech, co ordination, global development delay and also lost her hearing due to chemo. It’s been three years since she started therapy I recover, today she is walking alone most of the time, speaks 30 words, she is aided and her co ordination is much better. She is gettig better and better each day. When I read that Declan does his homework and goes ice skating I started crying with joy. Sorry to ask you this but did Declan suffer any repurcussions after the treatment? I am so happy that Declan is Doug great after so many years! My daughter is such a happy child, we are so blessed to have her in our lives. If you can take abit of time and send me an email I would greatly appreciate it. Thanks so much Joanna

    • Joanna – although Declan did have after effects, we are blessed that comparative to others they have been minor. He has moderate to severe hearing loss in each ear and wears hearing aides. He also also needed physical therapy and occupational therapy for balance and coordination issues – but he has significantly improved. He also is shorter than most of his peers (but whether that caused by the treatment is uncertain). Cognitively he has some processing speed issues which require some modifications at school but again minor, he is an avid reader and currently excels at school. But we know that where he is today is in part due to our tenacity and the gift of an incredibly school system that has worked with him from the beginning to make sure any early signs of challenges are caught and addressed immediately.

      My thoughts are with you and Norma….Best of luck!

  3. My daughter is a 3 yr ATRT survivor. She was diagnosed in 2007 at the age of 12 months. She has had lots of chemo, then the high dose with a stem cell transplant, then relapsed, then more chemo, and finally radiation…all of which was done at Duke. The radiation has pretty much ruined her although she “beat” the cancer. She is unable to walk, talk, wears a diaper still, her vision is compromised, cognitively she is like a 6 month old, has has abt 8-10 seizures a day from the radiation. She is turning 7 this week, which is hard to believe when the Drs didn’t think she would make it through the night multiple times. It is so great to hear of other survivors of this horrible beast that can manage fairly well on their own. Thank you Tym for posting this…and we will pray for continued health for Declan and all these little fighters.

  4. My 18 month old daughter has just been diagnosed with AT/RT we are from the UK. And if anyone has information that would help. We are meeting on monday to discuss treatment options. My email address is craigconnolly23@gmail.com thanks from Daisie’s Dad

  5. Beautiful story.. Our nightmare started jan 25/2013 my nephew xavier 2 years old was admitted to the er… Suffering headaches… After ct scans n mris they found a tumor on hisbrain…. Later they found out it was atrt cancer….. Radition was to strong for him… He needrd to be fully awake from sugery he never fully awake…. Feb 15/ 2013. Xavier was giving his angel wings n was Gods new. Angel…….

  6. Hello All,

    My daughter, 1 year 19 months old is being diagnosed with ATRT. A surgery was performed on Aug 3rd & as per the doctors 90-95% of the tumor has been removed from the brain.
    Now the next step suggested by my doctor is to start with chemotherapy from 17th Aug and radio theraphy is rukles out as it should not be given unless atleast the child is 2 yrs old.
    He has planned to follow european protocol for chemo.
    I kindly request any doctors in this forum to suggest an appropriate treatment plan based on it being successfully worked for other patients.
    Awaiting for quick responses.
    Also please let me know what else I can do as a parent. I need Support. Thanks.

  7. Senthil – A call with Dana-Farber’s brain tumor clinic might be helpful if you are looking for a second opinion on protocol – they know them all well.

  8. Hello, my name is Amanda. On April 13th of this year my daughter Aurora (7months at the time) was diagnosed with an ATRT tumor. We were told not to do any treatment and are still battling with this disease. If you could email me at Amandabrisson0910@yahoo.com I would love to speak with you on how you go through this. I am willing to do anything for my daughter anymore.

  9. Hello my name is Leticia. My daughter was diagnosed in 09′ at the age of 3 with this deadly disease. He beat it with flying colors but unfortunately it returned in 11′ she she has been fighting ever since. Our hospital is coming to a point where talking her hm is the only option!!! She looks great and is fine most days but her boned marrow is destroyed from years do treatment. We are not ready to surrender and neither is she. Do you know of any clinical trials that are worth looking at?? Thanks so much for ready this. We are desperate!!!

  10. My son David, 4yrs old, was diagnosed with ATRT brain tumor on Dec 16th. He has since completed his first 2 rounds of Chemo Therapy and is getting ready to begin his 6 weeks of Proton Radiation followed by 3 more rounds of Chemo Therapy. I am hoping to find someone who’s child was diagnosed close to the same age and has had or is currently receiving the Proton Radiation therapy. My husband and I are feeling very conflicted about this step in the treatment and would love to hear some perspectives from other parents and/or drs. We are very, very concerned about the side effects this treatment creates versus the “chance” of a cure. I have read a lot about the side effects on younger children but have not found any for children age 4 or older. Thank you. You can find David on the CaringBridge website (search: David Valentini) or email me at msvalentini4@hotmail.com

    Thank You!!

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