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Emma Grace

Age 1

Emma Grace is a strong, resilient little ATRT warrior. She was born on July 10. 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. She has a GoFundMe link to help with medical bills as well as other costs from being far from home — Thank you all for your donations, support, and prayers for our little warrior.

Emma Grace
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