Emma Grace's mom, Ryana, shared her reflections with our Hope4ATRT community during the course of their ATRT Journey.
Posted November 9, 2022
Emma Grace was born on July 10, 2021. Shy of a month after her first birthday, we discovered a brain tumor that has been causing her sickness. It started in June of 2022, where she had first started getting sick. Since then, she's been sick on and off. Luckily, by her first birthday, she wasn't sick. Shortly after, she became sick again - worse than before. Her appetite became much smaller, she became moody, and it was harder for her to hold her head up to sit.
It was then by August 5 where we decided to have her checked by the doctor again because medicines weren't working. Once we were medically evacuated to another island for further treatment, they discovered a bump on her fontanelle. After scans were done, doctors have told us there was a mass in her brain. There wasn't anything they could do, but we pushed to find a solution to help Emma Grace because she was deteriorating; she couldn't see or eat anymore.
When they contacted nearby hospitals, we were lucky to find out that a neurosurgeon on Guam could do an external ventricular drain procedure on Emma Grace before flying out to Hawaii for further treatment. The original plan was to be sent to San Diego but because of flight time, it was much safer to be treated in Hawaii. Her EVD was placed on August 7, and then we flew to Hawaii the day after.
On August 11, Emma Grace had her first resection. Her neurosurgeon was not able to completely remove the tumor because it was attached to important places. By August 23rd, she had a VP shunt placement and a week later, she started her two cycles of induction chemotherapy. There were good days and there were bad days. On the days that the side effects really showed, Emma Grace fought back and smiled and played through it all.
However, on October 6, Emma Grace had a code blue. It was the scariest moment of our lives. We are forever thankful for the nurses and doctors and staff that worked quickly and supported us through this time. Our little warrior was revived 20 minutes after and was moved to PICU. She went from using a ventilator to an oscillator, then back to a ventilator and now no longer uses it! Her team is still puzzled as to why the code happened, but one guess is that the fluid overload in her lungs caused her breathing to be restricted and ultimately stopped her heart.
She moved back to her Peds unit on the third of November and is resting up for her three rounds of consolidation chemotherapy in the next two weeks, possible resection, and proton beam therapy. We are so happy to be back in the Peds unit, and so are they! She is such a strong warrior and we are ever so thankful for everyone's support and prayers throughout Emma Grace's journey.
We hope sharing her story lets other ATRT warriors know they are not alone and lets the parents know what Emma Grace has been through to help out in some way. We also hope that ATRT awareness grows because it is rare and fast-growing. May more research find solutions to have our kids grow up just like any other kid.
Update as of March 20, 2023
Emma was able to complete one round of her consolidation chemotherapy with one stem cell infusion during December 2022, but was transferred to PICU during her stem cell infusion due to similar problems as before with fluid buildup. On January 12, she had her next resection, and we were told the great news of her doing so well and having a gross total tumor removal! But by the 17th, she had to have a VP shunt revision because it didn't seem to be draining well after her resection. It wasn't getting better by the 24th, and so she revisited the OR to see what was wrong. She caught an infection which caused her CSF to have gunk build up and clog her VP shunt catheter and ended up with EVD after the procedure. On February 9, she went back into the OR to replace her EVD catheter because it was also getting clogged from the gunk build up. By March 8, she was cleared from infection and was scheduled to have a VP shunt in place once again. But two days after, we realized she hasn't been acting like her normal self. She was sleeping almost 24/7, not opening her eyes at all, and was not moving her right side. After an assessment with her pupils showing no response, a stat MRI was ordered and we saw that her ventricles were still not draining well with the shunt in place. She went back into the OR for the shunt removal and EVD placement. A day after, we found that her breathing pattern has changed and called for immediate attention. She was rushed for a CT scan which showed that the EVD was draining well on one side, but the other side was not, and was continuing to swell her brain. This would be her third time in the OR within the span of four days. Her neurosurgeon had placed a second EVD and Emma slowly started acting like her regular self.
It is now March 20, and Emma is currently in the OR for a biopsy and a VP shunt placement. A few days ago, she did some scans and it showed that there was enhancement on the right side of her brain. The biopsy will confirm whether or not it is an infection, which we all hope it will be. It has been about six hours already, and her neurosurgeon should be wrapping up soon. We pray that this VP shunt insertion is successful and that she no longer has to keep revisiting the OR. Once she recovers well, she will be transferred to the mainland for further treatment. Because she had a gross total tumor removal back in January, her team and other doctors felt that she does not need to finish her last two cycles of consolidation chemotherapy with stem cell infusion and can go straight into proton beam therapy.
Update as of May 4, 2023
Her biopsy and shunt insertion (March 20) was successful! All good things, her biopsy report noted that it was not the disease spreading but rather scar tissue from previous surgeries. On Friday, she had her shunt placed on another spot to help the drainage much better. She has endured a lot, and on Sunday, March 26, she was cleared and said her goodbyes to her 'ohana in Honolulu and flew to San Diego in hopes of starting proton beam therapy – the last step in her treatment against ATRT.
However, since we've arrived, she hasn't been as active as on the plane, and after many tests, we discovered that her ventricles were once again filling up with CSF. Her tumor bed showed regrowth, and at that point, doctors did multiple tests and tapped her shunt every day for one weekend about 30cc's. After showing no signs of improvement, doctors have suggested that it was best to go under palliative care and end of life management. So many hard decisions were made, but seeing how far Emma Grace has gone and how tired she has been, we decided that it was best to stop her ACNS0333 protocol and follow her on her time.
Since then, we have made lovely memories with her at the privacy of her new, comfortable room. We had created her Beads of Courage, things to put inside her keepsake box, and a little thumbprint replica of hers to be little charms for her family. She has been such a fashionista with her cute little outfits every day and photoshoots. We were even able to have Elizabeth Ireland Photography capture amazing photos one Friday afternoon.
We are so thankful for the support, assistance, and love we have received from foundations such as Hawaii Children's Cancer Foundation, Little Wishes, Live Like Bella Foundation, Brave Gowns, Pinky Swear Foundation, Beads of Courage, Ronald McDonald Housing Charities, Emilio Nares Foundation, Cancer Kids First, Friends of Scott Foundation, Regali Jewelry, and most especially to Emma's team at Kapi'olani Medical Center for Women & Children and Rady Children's Hospital.
To our family and friends near and far, we are so grateful for the endless support and prayers we have received throughout her journey. Our hearts have been touched and we couldn't have been happier for the endless amount of love our daughter has received. We're certain that she has been able to brave a smile on her face every single day because of this.
Emma Grace has had a long and extensive experience in hospitals with many surgeries and cycles of chemotherapy. Her story has touched many lives, and we hope that it may help light the path to a safer and clearer option for ATRT treatment. Her GoFundMe link (https://gofund.me/ae9daa16) will be up for the time being to help with the hospital bills and further expenses to bring her home. We kindly ask to share the link as there are also updates of her story, and appreciate any amount that is donated. Thank you all for being with us through this journey.
May she rest in endless love,
Emma Grace Diaz-Palacios
07.10.2021 - 05.04.2023