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

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By Timothy Rourke

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, Dr. Susan Chi, 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.

 

53 comments

  1. Kristina Reynolds says:

    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

  2. Gary Faucher says:

    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!

  3. Robert says:

    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?

    • LEISL says:

      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

  4. 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.

  5. Kristy Evans says:

    Thank you for sharing your inspirational story. It truly gives other hope. K

  6. Cynthia Georgian Peloquin says:

    Your family’s happiness brings such happiness to me- and your eloquence always moves me. Thanks for sharing your thoughts-

  7. michelle says:

    My daughter has atrt n brings u hope readin dis amazin article we be travellin 2 dis amazin hospital

  8. Tory says:

    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

  9. Leslie says:

    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.

  10. Kristin says:

    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.

  11. 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!

    • Joanna Barbaro Sant says:

      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!

  12. Jodi says:

    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.

    • Catherine says:

      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?

  13. Mary beth says:

    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!

  14. Jan Priem says:

    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

  15. victoria says:

    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.

  16. 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

  17. Dawn Fries says:

    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

  18. Bettina Magin says:

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

    • Christine Cleary says:

      Hello, Bettina. I am sorry to learn of Amelie’s diagnosis. If you would like to discuss her case with one of our AT/RT specialists, you can request an appointment for a second opinion:
      http://www.dana-farber.org/Adult-Care/Appointments-and-Second-Opinions.aspx
      Best wishes to you and your family.

      • Bettina Magin says:

        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..

        • Jackie Broadbent says:

          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

          • Bettina Magin says:

            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

  19. Brita from Germany says:

    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

    • Bettina Magin says:

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

      • Brita says:

        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

  20. Juan G. says:

    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

    • Tym Rourke says:

      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.

  21. Glama says:

    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.

  22. Joanna Barbaro Sant says:

    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

    • Tym Rourke says:

      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!

  23. Sara Moody says:

    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.

  24. craig says:

    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

  25. Claudia says:

    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…….

  26. Senthil says:

    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.

  27. Tym Rourke says:

    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.

  28. Amanda Brisson says:

    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.

  29. Leticia says:

    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!!!

  30. Sarah says:

    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!!

  31. Michelle Driene says:

    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.

  32. Micheal says:

    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

  33. Stephanie Lynn says:

    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) http://www.cbtrf.org/ 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!

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