Most families spend Christmas Eve together in the warmth of their own homes, not in the surgery waiting room. On December 24, 2012, Daphne and Martin Estrada found themselves in a waiting room, instead of their living room, anxiously awaiting the results of their youngest son's brain surgery.
Matthew Estrada was born July 3, 2010. Daphne had an uneventful delivery, and the happy family took him home on July 4.
"It was a nice little celebration for us," Daphne recalls.
As he continued to grow, Matthew hit all the normal, healthy child milestones—he started walking and talking at the right time, he loved playing with his brothers and climbing on everything. But, Matthew's weight was not increasing along with his abilities.
"After a year, year and a half, he just he wasn't gaining any weight," says Daphne. "His brothers had always been healthy, chubby little babies, and he wasn't that way. He never really showed any symptoms to give us any indication there was something wrong."
After Matthew's second birthday, his weight started to decline drastically. He would wake up vomiting and began to look malnourished.
"Daphne was concerned because he didn't want to eat," says Dr. Stephen Sawyer, Matthew's pediatrician at Shannon. "At that point, we decided to increase his calories and have him come back in another month. At that checkup, he still had not gained any more weight, despite his mom's effort to push the calories. In September 2012, we ordered a full lab evaluation for what we call ‘Failure to Thrive.' Basic blood work, electrolyte panels, thyroid tests, Epstein-Barr virus test, sweat test for cystic fibrosis, and everything came back normal. We went further and referred Matthew to a pediatric gastrointestinal specialist who checked for Celiac disease, but came to the same conclusion."
On December 17, Matthew was admitted to the hospital. At that point, he had lost three pounds when a normal child should have gained five or six.
"We did a CT scan of his abdomen and pelvis and a swallow study, but everything came back normal," Dr. Sawyer says. "His GI doc thought he had a malabsorption syndrome or a physical obstruction that was leading to the weight loss since we couldn't get him to gain weight, not even in the hospital. This doesn't happen very often. At that time, we made the decision to transfer him to a special facility."
On December 19, Matthew was transferred to Dell Children's in Austin.
"Dr. Sawyer did every test—twice," Daphne, a nurse herself, recalls. "We went through scans, blood tests, any test you can think of from the neck down. He told us the next step was to be transferred. It was scary. I knew if we couldn't find anything wrong here at Shannon, then it couldn't be good. I was scared to find out what it was. I know how things work, and sometimes when you have to be transferred out it means things are worse. We got to Austin at 4 a.m. and a doctor greeted us and told us what would happen next. They checked him out, did an EGD, put in a pic line and temporary feeding tube, then he went for a MRI. Dr. Sawyer had done such a thorough workup at home they knew what it wasn't, so they started other tests. Within 24 hours we had the news. They showed us the MRI and what had been the problem all along—Matthew had a brain tumor."
Matthew had normal neurological exams the entire time he was sick. His symptoms never alluded a brain tumor may be the underlying cause of his weight loss. He never had seizures, problems with motor skills or even headaches which is why his doctors did not think anything neurologically related was the root of his problems.
"The location of his tumor was the reason for his symptoms," explains Dr. Sawyer. "It was located right behind his eyes in an area that didn't affect his motor cortex or his coordination. As it grew, it reached a part of the brain that made him not want to eat. As it continued growing, it applied pressure on the brain that triggered the vomiting."
"It wasn't the news we wanted, but at the same time we were able to begin a course of action to get him better," Martin says.
A preliminary biopsy discovered Matthew's tumor, a suprasellar pilomyxoid astrocytoma (PMA), was located in the mid-brain area. It started over the optic nerve and crawled over the hypothalamus into the pituitary. It sat in the center part of the brain, which makes it less accessible and more difficult to operate on than something on the outside of the brain.
"Once the surgeons knew what they were dealing with, they presented the options which were limited, especially because of Matthew's age," Daphne says. "Because of the location to the tumor, they could not go in and remove it all. They recommended de-bulking it, removing as much as they could."
At 6:30 a.m. on Christmas Eve, Matthew went into surgery. It was a long procedure; his family did not get to see him until 5 p.m.
"I think we were the ultimate optimists," Martin says. "We tried to stay positive and stay close to our family the whole time. I think it helped that the medical team was always positive. They did inform us of all the risks, but they did it in a positive way and that really helped."
During the delicate procedure, the surgeons were able to remove the core of the tumor and place a shunt in Matthew's brain to help drain fluid and decrease pressure. However, Matthew suffered a stroke during the surgery.
"We knew stroke was one of the many risks of the surgery, and his left hemisphere was affected," Daphne says. "In the surgeon's eyes, he was very happy with the results of the surgery because he was able to remove so much of the tumor. All things considered, if the stroke was the worst that happened, then we knew we could handle it."
The surgery allowed for Matthew's brain to start healing and for the swelling(hydrocephalus) that had been present for so long to go down. The family thought the starting line to the journey of recovery was in sight. But, an infection from the shunt set back the healing process more. After they got over that hurdle, Matthew had a feeding tube and a port for chemotherapy placed.
"Children are so resilient," Martin said. "Matthew's middle cerebral artery was affected during the stroke, which caused hemiparesis, paralysis of the right side, but the doctors were also very reassuring after the surgery and told us not to worry about the function Matthew had lost. They told us he would regain it. The stroke to them was just a minor setback."
After more than 50 days at Dell Children's, Matthew was transferred to Cook Children's, where he received his first three chemotherapy treatments. Thankfully, he was able to carry out the rest of his treatment at the Outpatient Chemotherapy Clinic at Shannon. He finished his chemotherapy in December and the treatment worked really well. His tumor has started to shrink. The tumor did metastasize to the base of his brain and down the lower spinal cord. These lesions are also stable.
Tiffaney Shaffer, RN, Shannon Pediatrics Unit Manager, worked with Matthew and his family throughout the course of his treatment.
"Matthew's treatments consisted of IV hydration and chemotherapy, which typically took six to eight hours depending on the medications," Tiffaney says. "We witnessed Matthew completely change over the course of his treatment. He relearned all of his motor skills, he started to talk again and you couldn't keep him quiet, he ran down the halls, he transformed into a regular toddler again. It's amazing to see the resilience that kids have. He was smiling, talking, playing and we were able to see all of that happen here at Shannon."
Matthew has bounced back from all of his setbacks and is enjoying life as much as any four-year-old little boy can. He has physical, speech and occupational therapy appointments several times a week to help him continue to recover functionality. He also has some vision complications and sustained some hearing loss. His family thanks their incredible support system of family members, coworkers and hospital staff.
"I never would have thought we would have to utilize Children's Miracle Network," Daphne says. "But, looking back at it now, our pediatric oncology nurses received training through CMN, and IV and special syringe pumps, any toys or special equipment to help take care of our local kids, are provided by CMN funds. Not having to travel anymore was just so nice for our family. It took away a huge burden. Matthew could be in his own home with us. Children's Miracle Network doesn't just help one person, it helps the whole community."
The research on Matthew's type of tumor is only a decade old. Of all pediatric brain tumors, one percent of patients will have this particular tumor. His doctors will continue to monitor the tumor to make sure it does not grow again. They suspect Matthew was born with the tumor and as he began to grow, it grew with him.
"He is still at risk, but we've made it this far and we will see where we go next," his parents say. "We just try to keep positive. Every day with him has been a miracle, from the time they diagnosed him. It is a parent's nightmare to get that type of news, but to have him another day and see how much he has progressed that makes him a miracle."
Tiffaney sums up the Estradas experience best.
"For someone to have to go through what they did and come out on the other end wanting to share their story, that's a miracle," she says. "They want people to know you can get through it and you are not alone; there are people here that care. They were placed here to show that they are a miracle. They are just awesome."