We honor the incredible children that are on active treatment and post treatment for ATRT.
Leo (Age 8 months)
Leo was born with obstructive hydrocephalus and had a VP shunt placed on his 3rd day of life. From his very first breath he has been full of spunk and personality. He has always been incredibly sweet natured, very social, charming, and cuddly. He also has always had strong opinions. His ability to communicate, even as an infant, was what clued his parents into the fact that something still wasn’t quite right.
After a series of MRIs and NICU/PICU stays, Leo was diagnosed with an aggressive Atypical Teratoid/Rhabdoid Tumor in August when he was 3 months old.
He started an intense induction chemotherapy regimen in August. After completing 3 tough rounds we received MIRACULOUS news in November that the tumor could no longer be seen on MRI. In fact his oncologist used the word gone! We are so thankful to God for watching over Leo and giving us hope!
Because ATRT is very sneaky and likes to come back....Leo’s team at Children’s Hospital Colorado recommended that he still complete the planned 3 rounds of High Dose Consolidation chemo with stem cell transplant. It is part of the ACNS003 protocol which has been one of the most promising for kids with this type of tumor.
Leo is currently inpatient doing well in the first of these 3 high dose cycles. As we wait patiently for his counts to go up.... we also pray constantly for him to stay free from any complications, infections, or damage from this intense chemotherapy.
All being well with chemotherapy, a cure for ATRT is not usually secured without radiation. So Leo’s team is recommending radiation immediately after completing treatment. Radiation is not usually recommended before age 3 and almost never before a year. We are taking one day at a time and hoping that God will show us the way and help us see clearly the right path moving forward.
Follow Leo’s site to stay updated on his ATRT journey: https://www.caringbridge.org/visit/leoequalslove
Leo = Love
Leo=Love is about a tiny boy who is loved more than cancer can ever be hated.
Caleb (Age 5)
Caleb is a triplet and was diagnosed with an ATRT brain tumour in February 2019 just 4 weeks after his 3rd birthday. He had no big signs of sickness until one day he vomited. Over the course of 4 days, we went to different doctors and hospitals and on the last day, we stood our ground and begged them to scan him as he kept complaining of a headache. They discovered he had a mass in his right frontal lobe. It was removed with a total resection and after 10 days the biopsy came back with his diagnosis. Living in the UK, we were told Caleb needed proton beam therapy along with his chemo. We flew to America and spent 8 weeks receiving proton therapy alongside chemo and then once home he completed a total of 12 sessions of chemo.
Life was really hard having three 3-year-olds with one who was really sick, but we got through it with the help of family. I can now say after 1 year of treatment, Caleb is now doing well and had his first 3 monthly scans which showed NED. He will receive another scan every 3 months. The next should be in May. We are so proud of our son and everything he has endured to be here. He was born at 27 weeks and has fought his way through life. His sisters are incredible and have helped him through so much. They say multiples have a bond and I feel our triplets have certainly got that.
Updated January 25, 2021:
Caleb started the trial drug tazemetostat and had his first scan Nov 2020 which showed no new growth. We were so happy to be able to plan Christmas when just a few months before (June 2020) we were placed on palliative care and given no options...with the prospect of not seeing Christmas. Thank goodness we fought to give him this drug. His latest scan was January 18th to see how he is responding to this drug. The results show NO NEW GROWTH!
This Christmas (9 days before) Caleb contracted meningitis from an ear infection he fought for 3 days in ICU and needed lumbar punctures and blood work to find out what was wrong. He had an extremely high temperature and nobody could determine what was wrong until tests came through. It was very serious and there was a crash team involved as his heart rate went so high. It was such a worrying time not only because of the meningitis but because he had to be taken off his tazemetostat, the one thing that was positive in our life - to keep our precious boy alive.
However after day 3 and course of antibiotics of 4 weeks (we are currently on week 3) he is doing ok. There is still a pocket of green fluid in his ear and doctors are not sure where it has come from or what it is. They are trying to determine whether it came from the tazemetostat as a side effect but so far results are inconclusive. Our worry is the meningitis comes back from the fluid. For now we live in wait on what our next steps are. It's a worrying time but we just hope things go in the right direction.
Seeing Caleb turn 5 after these past 2 years is incredible. He was diagnosed with ATRT just 4 weeks after his 3rd Birthday and despite relapse last June he is still here fighting. We are incredibly proud of our little superhero and of all his achievements despite the mountains he has to climb everyday. He even managed to start nursery with his sisters last October, something we thought we may never see.
Never give up hope as with ATRT our children create their own path and show us the way.
Follow Caleb on his Facebook page: https://www.facebook.com/caringforcaleb3/
Eva (Age 3)
We were on vacation in Australia in November 2018 when Eva started vomiting every morning. We thought it was congestion at first, but it persisted. She was treated for a UTI while we were away and the antibiotics seemed to help. Once we returned to Canada at the beginning of December 2018, the vomiting continued. After several trips to the ER, the pediatrician we were referred to sent us back for an emergent CT scan. December 20, 2018 was when they found the mass growing in her brain. She was 11 months old. That was the last thing we thought could be wrong with our baby. She was an otherwise healthy and happy baby. We were admitted that night and she had surgery the following day. She was recovering in the PICU 24 hours after finding the tumour. The tumour was located in the posterior fossa and fully resected. She spent the next two weeks in PICU, including her first Christmas. She had RSV and was intubated for much of that time. That was also when we learned one of her vocal chords was paralyzed and her swallow was compromised. She spent her first birthday in the OR having her broviac placed. Four weeks following her surgery, she was placed on the SickKids protocol and started three rounds of induction chemo. Due to fevers and other infections she spent almost the entire time in hospital. She then did three rounds of HDC with stem cell transplants. She actually fared better during those rounds and was able to enjoy some time out of hospital. Following that, she began 12 months of maintenance. It was at that time that we were able to resume a ‘new normal’. Her vocal chord paralysis improved back to normal and her swallow started to improve as well. Within three months she was off tube feeds, and within another few months she was able to drink fully and take her meds. Finally NG free after almost one year. She completed maintenance in June 2020. She spent 18 months of her first 30 months in treatment. But, she did it with a smile, and a strength we didn’t know possible. We are grateful everyday. We do not take for granted how well she is doing. She has caught up on her speech and is now such a chatterbox. Her walking took much longer. She can walk relatively well, but still struggles with balance issues. But, for the most part she is a typical three old. Eva is bright, clever, and mischievous. She makes us laugh everyday. She is the most resilient and determined person we have ever met. She adores her big sister and our hope is that they will continue to grow up together.
Tori (Age 6)
When Tori was diagnosed with ATRT at 9mo old, the doctors initially thought her best option was going to be to take her home and make her comfortable. They told us she was most likely not going to see her first birthday. Two days later, we were given a miracle and her surgeon was successful in a complete tumor resection; when all he was really going for was a biopsy. We do not take any day with her for granted and are so thankful to be able to have her in our arms to celebrate her turning 6yrs old!!
Harry (Age 2)
Harry was officially diagnosed a week after he turned 1. His surgery to remove the clementine sized tumor from his brain was two days prior to diagnoses. His protocol called for two rounds of induction chemo and three rounds of high dose chemo with stem cells possibly followed by focal proton radiation. He did pretty good with the induction chemo rounds with some side effects that were minimal. The high dose round on the other hand, landed him in the ICU for a couple of weeks due to VOD. After that, and several discussions with his oncologist and several others, we decided that more high dose chemo was not what we wanted. He did have about 6 weeks of focal proton radiation in July and August. We are currently in talks with his oncology team about next steps. We know how much of a beast ATRT is and we want to do everything we can to make sure this beast stays away!
Follow Harry’s Journey: Harry The Tiny Hero
Dakota (Age 7 months)
On July 8, 2020 we welcomed our second child, a healthy baby boy into this crazy world. When we first found out we were expecting we had no clue that a global pandemic would begin 5 months into the pregnancy. This came to be somewhat of a blessing as it allowed us to spend some quality time with our daughter before she became a big sister. We held out hope that this would all be over by the time he was born, but unfortunately it only got worse. By the time he was born our area was having record-breaking cases and hospitalizations and the hospitals had changed their visitation policies to no longer allow anyone but my husband and I to be there. Nevertheless, we were still blessed with a seemingly perfect and healthy baby boy we named Dakota! Things were going great and he was meeting his milestones and even surpassing some for his age. Right before Dakota turned 3 months old we started noticing a slight twitch in his eyes when he would look to the side and he seemed to be having a hard time holding his head up. He had also began vomiting in the morning after his first feed of the day, which we thought at the time was due to congestion that he was experiencing. We took him in to the pediatrician for a weight check and brought up our concerns and we were referred to a neurologist to perform an EEG because they were thinking he might be having micro-seizures. Two days later, the day he turned 3 months old, we took him in for the testing and the neurologist came in to go over what he saw on the scan, which was great news because he wasn't seeing anything irregular. But he went on to assess him and that's when he became really concerned, Dakota's fontanelle was not soft and when he moved his hand towards his face he was not reacting as he should. He sent us to the ER immediately for an MRI and that is when our world came crashing down around us. When we arrived they sent him back for a CT scan which was showing a blockage that wasn't allowing his cerebral spinal fluid to drain like it should. They called in the neurosurgeon to come speak with us and she performed surgery to put in an external shunt to start relieving the pressure and did an MRI which confirmed there was a tumor at the base of his brain. She told us that it was very likely that he had ATRT but couldn't confirm until they got in to perform surgery to remove the tumor and send it off for pathology. The next day he underwent surgery and they were able to remove 80% of the tumor but noticed that it looked like it was starting to sugarcoat the spine, which was later confirmed by another MRI. He spent 19 days in the PICU and during that time it was confirmed that he had ATRT. His chemotherapy began just two weeks after he was first admitted. He is currently finishing up his first cycle of what will be a total of 3 before beginning high-dose chemo with stem cell rescue as long as things go well and the tumor responds. We pray everyday that he may be a survivor of this beast, and are trying our hardest to never lose hope.
Follow Dakota’s Journey: Dakota's Fight Against ATRT
Jocelyn (Age 3)
Jocelyn was diagnosed May 2019 at 17 months old. She fought all of 2019 with 5 chemotherapy treatments, 6 weeks of proton radiation and multiple surgeries.
She was declared cancer free March 2020, but sadly her first post treatment check up scan in July showed the cancer had returned. She went into another brain surgery followed by 2 more chemotherapy rounds. She then had another MRI scan which showed more tumor progression. Jocelyn's most recent surgery was October 14th.
She is now participating in the MEMMAT treatment protocol.
Zayvian (Age 5)
Zayvian is a spunky 5 year old boy who was diagnosed with ATRT at 2 years old. After 2 brain surgeries, chemo, a relapse, 3 stem cell transplants, and 6 weeks of radiation Zayvian was declared NED in June of 2019. He rang the bell June 19, 2019. He then suffered radiation damage (inflammation in his brain) and lost all ability to walk, talk, and even sit up on his own. After being on Dexamethasone for a couple of months he has started talking, sitting, and standing on his own again. We are currently working towards him walking again.
Follow Zayvian's story at: Facebook.com/ZealousZayvianWarriors
Jonathan (Age 5)
Jonathan is an energetic and loving 5-year-old who loves superheroes, boxing, family movie nights and playing with his cousins. His favorite superhero is the original Incredible Hulk. He easily changes from Bruce Banner to the Hulk in a matter of seconds and we all know and love his famous #HULKSMASH move. In November of 2019, Jonathan started complaining of headaches, neck pain and occasionally vomiting. Shortly after, he was diagnosed with the Flu, so his complaints were warranted as symptoms of the Flu. His parents, Elizabeth and Jonathan Sr. did not notice a real improvement and on January 13, 2020, after a second trip to the ER and another positive Flu diagnosis, a CT Scan revealed excessive fluid caused by the presence of a brain tumor. Since January, Jonathan has endured 4 major brain surgeries to alleviate the fluid pressure and remove the tumor. Jonathan's symptoms persisted and that led our family to seek expert medical attention at Philadelphia Children's Hospital where they specialize in pediatric brain tumors. The entire family relocated from Florida in search of hope for surgery and treatment.
Incredibly thankful to have made it to CHOP and grateful for the wonderful Neuro-Oncology team that oversees his care. In March of 2020 Jonathan's tumor was resected, and pathology confirmed Jonathan's brain tumor was malignant and metastatic. This journey has been bittersweet. The darkness that foreshadows the words "pediatric brain tumor" has tried many times to take over our circumstances. After multiple MRI’s, CT scans, pokes, blood draws, NG tubes, ports, the insertion of a G-Tube (feeding tube), Pheresis Catheter placement and removal, Double lumen broviac lines, 5 cycles of chemotherapy, 3 stem cell transplants, physical therapy, occupational therapy and countless other procedures – Jonathan is still Hulk Strong.
During this critical and unsettling time of the COVID-19 pandemic, Jonathan has not been able to see his extended family. The beauty of virtual hugs has become a daily practice for our family.
https://www.facebook.com/Jonathanoursuperhero/ Instagram- @jonathansjourney2020
Asher (Age 4)
Asher was diagnosed in August of 2017- just a few weeks after his first birthday. He had 3 tumors, the large frontal lobe one, the small frontal lobe one, and the scary one (a hemorrhaging tumor located in the pineal region). He bravely endured 3 major brain surgeries, 2 rounds of yucky chemo, 3 rounds of brutal chemo with stem cell rescue, and 30 rounds of focal radiation to finish treatment in June of 2018. We just celebrated stable scans last week, and he continues to be NED, but closely monitoring a treatment related cyst.
We are 2 years post-treatment from ACNS0003 with focal radiation. He had his last scans 1 week before his 4th birthday and everything continues to look stable!
Today, Asher is a happy 4-year old who loves his dog, books and Lightning McQueen. He continues to make forward progress on eating, speech and balance post-treatment.
Taylor (Age 7)
Taylor's journey started nearly 2 years ago following his 5th birthday. His first MRI showed 3 tumors in the skull, another MRI showed 2 more additional spots in his spine. He was treated emergently. Started with chemotherapy less than a week after his crainiotomy. Started radiation within 2 days post op. He endured 9 months of chemotherapy and 36 doses of a combination of photon proton therapy. He has a rare complication of treatment called Disseminated Necrotizing Leukoenchephalopothy. We continue to manage late effects that pop up. Over all, this little man of ours has taught us so much about life in his 7 years than I could ever imagine. He continues to inspire us and challenge us. He has been in remission for just over a year. We are looking forward to getting out of the hospital and starting therapy to regain some strength and abilities.
Isabella (Age 5)
Isabella was diagnosed with a brain tumor on 1/13/17. She was 17 months old. Isabella began having symptoms a week prior. She was randomly vomiting and losing her balance. After throwing up at daycare, she was taken to the pediatrician who noticed a slight head tilt to the left when Isabella walked. The doctor scheduled a CT scan that afternoon “just to be on the safe side”. That same evening we were admitted to the oncology unit at Arnold Palmer Hospital in Orlando. 5 days later Isabella had a craniotomy to remove and biopsy the tumor. We received the devastating diagnosis of ATRT.
Not only does ATRT have a very poor survival rate, it also doesn’t have a standard treatment plan. This is left for the parents and medical team to decide, which is an impossible and daunting responsibility.
Isabella underwent 15 rounds of chemotherapy and 30 days of radiation treatment. She spent the majority of 2017 in patient and in isolation.
In March of 2018 Isabella completed treatment and rang the bell. She is currently cancer free and thriving.
Isabella has now reached the 2 year post treatment mark which increases her survival rate. This has been a huge milestone for us. She continues to get MRI scans every 4 months for now. We know how lucky we are. ATRT takes most kids. I hope this will inspire and bring HOPE to others in this journey. Never give up hope.
**Update on 5th Birthday: 2.5 yr scans show NED!!!
Follow her journey here: https://www.facebook.com/Isabellawarriors/
#isabellastrong #isabellawarriors #isabellaisacancersurvivor
Jade (Age 7)
When Jade was 5 she began waking up some mornings with sore head with intermittent vomiting. A visit to our local GP lead to some blood tests, eye tests, food diary and then an MRI just to be safe. Never in my mind had I thought of anything untoward. On the 12th April 2019 our local radiology dept located a 7cm mass on Jades brain and we were rushed to Perth Children’s Hospital as as there was so much pressure built up in Jades brain a slight knock would be fatal. There was no time to react, think or research.. on 15th April 2019 she underwent 6 hours of surgery.
Jade was diagnosed on 12 April 2019 with brain tumour 7cm mass. . On 15/04/2019 she underwent over 6 hours surgery. Left frontal craniotomy with frontal lesion excision with successful gross total resection of tumour with no major damage to Jade in anyway. Confirmed as ATRT.
01/05/2019. Infection in wound required further surgery and removal of infected skull section . Jade had to wear a protective helmet to protect her brain area whenever risk of impact so most of the day except when sleeping..
15/05/2019 -03/10/2019 intense chemotherapy with stem cell recovery protocol ACNS0333 with proton treatment at the end.
27/10/2019 Jade and her family travelled from Australia to Jacksonville USA to receive proton treatment as not available in Australia.
03/01/2020 returned to Australia and treatment protocol completed
26/3/2020 major surgery to insert Acrylic plate so no helmet required to be worn.
22/04/2020 Jade commenced trial chemotherapy as preventative. North Study..daily oral chemo at home for one year. All MRIS have been clear with no sign of reoccurrence.
20/05/2020. Jade was admitted to hospital as chemo was so detrimental to her little body. Chemo trial was ceased as too many red flags and damaging to Jades health.
16/07/2020 MRI to be done and will await results. Treatment completed.
Jade is back to her sassy, cheeky self and yes we have lots of side effects and long term issues to overcome, but we hope our story can give other ATRT families the strength and hope to stay strong and fight for survival. ATRT you are a horrible beast but we will fight you together.. we are strong.
Gavin (Age 11)
In July of 2017, at the age of 8, Gavin was diagnosed with a type of brain tumor called ATRT. He began the ACNS 003 protocol at Children's Hospital of Orange County the following week. After a couple of rounds of chemo, the tumor had shrunk enough so that he was able to have surgery to remove part of the tumor. He then had 3 more rounds of high dose chemo with stem cell transplants, followed by 6 weeks of proton radiation. He ended treatment on February 28th, 2018. His MRI in July of 2018 showed a spot that they suspected was a recurrence, after a biopsy, it was determined to be radiation necrosis. He then underwent 40 hyperbaric treatments to treat the necrosis.
In February of 2019, Gavin had a routine MRI that showed a new tumor in the original tumor bed. He then had surgery to respect the tumor and it was confirmed that his cancer had returned. He had surgery to put a port in his head and also his chest. He began a yearlong chemo protocol called MEMMAT and finished on February 2, 2020.
Gavin has lost a lot during his battle with ATRT, including the use of his left hand, he has limited mobility and balance, his vision in his left eye and peripheral vision in both eyes are pretty much nonexistent. He has foot drop and he will face a lifetime of difficulties due to the harsh treatments that he has endured. Even though cancer has taken a lot from Gavin, the one thing that has not taken is his SMILE. #GAVINSTRONG
Follow his journey here:
Cayden (Age 13)
Cayden’s journey began when he was just 11-months old. As an infant, Cayden was a happy and alert baby. As time progressed, he began to lose those milestones. After a trip to the emergency room, we learned that the mass in Cayden’s head was a tumor called ATRT.
Cayden successfully had his tumor removed; and began the fight of his life. After nearly four years of chemotherapy and radiation, it seemed the closer he got to the finish line, the more obstacles he had to overcome. During this process he lost his hearing. Today Cayden is a happy 13-year-old who loves to sing, dance and eat pizza.
Calynn (Age 3)
Calynn became severely symptomatic on her 2nd Birthday. Her eye forcefully turned inward, her facial expression became delayed on that side, her balance became very uncoordinated and she struggled to walk. It took just over a month and a trip to the ER to diagnose her with a brain tumor which eventually we would find out is AT/RT. Since Jan 31 we have been hospitalized. We had a resection on Feb. 5 that removed roughly 95% of the tumor. We waited for her to heal and started the Boston Farber protocol on March 9. I am happy to report as of April 13 the tumor is gone. We still have 47 weeks left of chemo/radiation. Caly has the SMARCB1 gene so we will continuously monitor for new tumors. Follow her journey: https://www.facebook.com/CalynnPrincessWarrior
Vincent (Age 2)
Vincent is 2 and currently in treatment for relapsed ATRT. He was just 4 months old when he was diagnosed with 2 brain tumors. Vincent went through 13 months of intense chemotherapy including a stem cell transplant, endured 6 brain surgeries, over 200 days in-patient, over 100 blood transfusions, went into liver failure, developed hearing loss, lost the majority of the motor function on his left side, and has fought hard to live every day for the past 22 months.
He was NED for 13 months but devastatingly relapsed with a new primary tumor just 5 months after ending treatment. He started chemotherapy again in March and will have his 17th brain & spine MRI the first week of May. Vincent also has a germline mutation, Rhabdoid Predisposition Syndrome, that makes him more likely to develop rhabdoid tumors.
Vincent is currently thriving. He is a happy little boy full of joy and love.
Follow his journey here:
Caleb (Age 5)
Caleb was just like any other 3-year-old. He loved playing outside, attending pre-school, and playing t-ball, soccer, and bowling. But that all changed on August 30, 2018. What started off as a normal morning quickly turned into a day that changed our lives forever. After Caleb had a seizure he was rushed to the hospital where they found a mass on his brain. They performed surgery the next morning to remove the tumor, and we waited 2 weeks for pathology results... and then we got the news that he has AT/RT. We were told survival rates are poor, and we were devastated. We researched treatment options and decided on St. Jude in Memphis. St. Jude had a treatment plan that differed from other hospitals, and that included trial chemo as well. We moved to Memphis 4 days after we received the news and spent almost a year there in treatment. Caleb underwent 30 rounds of proton radiation, followed by 5 rounds of high dose chemo. We were able to return home to Tampa in July 2019 with Caleb classified as NED. We did 6 more rounds of oral chemo at home, and he finally finished treatment in March 2020! Caleb remains NED and is happy to be home back in preschool, learning to swim, and enjoying all the things he’s missed out on during treatment. It’s been a long road, but he is our Superhero!
Jason (Age 2)
Jason is a lion of a baby and he has fought this cancer with a smile on his face at all times. We have had our dark and tense moments, but his bright blue eyes remind us it’s never the time to give up. Diagnosed at 11months, flew from Italy to Memphis, and started treatment in August 2019. NED since resection and we’re so very grateful for this. He is going through maintenance right now and should finish around August or September. Next scans in June. Right now, we’re working hard every day on learning how to walk, talk, and properly use the left arm and just recently started lifting it spontaneously!!!
8/17/20 Update (2nd Birthday):
Jason is happily recovering from the LAST round of maintenance chemo sealing off the long awaited end of treatment. The next scans will take place at St. Jude on September 8th.
He’s working hard to overcome the radiation necrosis that ensued in May, one of the many side effects that complicate the life of all these little fighters to various extents.
Right now he’s alive, he’s well, he’s smiling and enjoying life, and this is plenty to be grateful for, to EVERYONE who has supported him, directly and indirectly.
We hope one day we’ll be looking back to these moments that forged in him the resilient warrior he has become, fighting off the shadow of relapse that our cancer survivors have to deal with.
Shourya (Age 4)
Shourya - means "The brave one". Shourya started his battle at 2 Years 10 months on March 27th, 2019. We got the news of his diagnosis on Mar 24th, the day our happy world was shaken, and we knew it wouldn't be the same after that day for the rest of our lives. But we never lost hope and decided to try our best to battle this beast. He is fond of avengers and spiderman is his favorite, he believes that he is getting treatment so that he will be a spider man someday. He has been NED right after the surgery. His treatment will be completed by April end this year. One long year of struggle, 30 chemo sessions, 24 radiotherapy sessions, 6 platelet, and 3 blood transfusions. He tolerated it well and he always surprised us with his will power, he gave us immense strength with his smiles. He showed us the real meaning of life, he is my Guru, my God, My Father and My Son "Shourya"- The brave one.
By Shourya's dad, Sai.
Oliver "Ollie" (Age 7)
Oliver “Ollie” Lemieux was diagnosed with an ATRT tumor on his lower spine when he was 8 months old. He responded very well to treatment and is NED, but over the years has experienced issues due to treatment and has undergone several surgeries and lots of therapy to help him thrive. During treatment Vincristine caused temporary paralysis of Ollie’s swallowing muscles and he has been in intense feeding therapy ever since to help with his severe anxiety and food aversion. In just the last year Ollie no longer is dependent on his gtube for nutrition because he will willingly eat table food. Ollie also has a cecostomy port that controls his bowels as he has no control over his bladder/bowels due to tumor location. This has helped “normalize” him in social settings with his peers who are unaware that he is incontinent. Today Ollie is an exuberant, monster truck loving 7 year old who is 6 years out of treatment with no relapse and about to enter survivor clinic.