Lucas Travis Ornellas born 5/1/2018 at David Grant Medical Center, Travis Air Force Base. Lucas was the perfect baby, only fussed when he wasn't getting enough hugs and kisses from everyone!
For the first 2 month of his life, Lucas was hitting all of his mile stones and developing very well. No signs of anything wrong or potentially wrong. He loved to eat and at times would eat up to 6 oz of milk in one setting and get "Milk Drunk." He had no issues with travel and actually loved car rides and seeing new places. He would interact with lots of people and love every min of it. At one point, he sounded like he said "I LOVE YOU" back at two months.
He started to show signs of being uncomfortable and both of us believed that he was just Fussy and having acid reflux. We went to see his pediatrician for the first time for his fussiness around two and a half months and we were told that his fussiness could be related to mommy's diet because at the time he was breast feeding.
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Mommy changed her diet but it seemed like nothing was really working... It even got to the point were Lucas wasn't wanting to eat anymore and we could only get an 1oz. every 3 hours. We noticed his weight also dramatically changed.
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We finally got another appointment with his Pediatrician and he was extremely worried about his weight (Lucas was only 9 pounds at three months). The pediatrician admitted us to the ER at David Grant Medical Center at Travis AFB and they had transferred us to UC Davis in Sacramento because they couldn't treat an Infant.
📷Lucas experienced his first Ambulance ride!!!
There was many trials/labs done to find out what was really going on with Lucas. They believed that he had extreme acid reflex and placed an NG (Nasal Gastro) tube and started to feed. Lucas was tolerating his feeds at first with only throwing up once a day. We were sent home 4 days later and thing seemed to get worse... He started throwing up a lot more, having more pain and loosing weight again. During these times, he wasstill smiling at times and even giving us playful interactions. There was no indication that there was something extremely wrong with him other than him throwing up, losing weight, and eye change with horizontal nystagmus. Up to this point, every doctor we had talked to us about the eyes and said it was something normal to see in infants his age (It was part of his development).
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Thank god our pediatrician noticed that Lucas' horizontal nystagmus was a little more extreme, and sent us back to UC Davis a week and a half later. Our Pediatrician made it very clear to UC Davis to really look at his eyes and by him doing so, they had an Optometrist come and look at Lucas. There was nothing found in the eye exam and they thought that Lucas' eyes were actually really healthy. But, just like the pediatrician, he felt that the nystagmus was a little extreme and ordered an MRI to make sure that there was nothing else going on. During this time he was still not eating and throwing everything up. Picking him up would only make things worse...
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We had our very first Neurological MRI with Lucas on 9/1/2018 and we had found something that should not be in a 4 month old. There was tumors all through out his Head and all the way down his Spine.
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We were in disbelief and shock. We were absolutely devastated and rushed to the Pediatric ICU at UC Davis for the next day and a half. This was all going on during a three day weekend and the neurosurgeon was not available at UC Davis. So we were air lifted to UCSF Benioff Childrens Hospital on 9/4/2018.
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To figure out what we were dealing with, he under went brain surgery and got biopsy of the tumor on 9/5/2018. He was in critical condition and we were on high alert to manage his pain.
Three to four days later, we got the results of the biopsy witch it was called Pilocytic Astrocytoma. Pilocytic Astrocytoma is not normally found in infants and is extremely rare. We were also told that this Cancer is a Grade 1 and slow growing... So we thought...
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One year to these diagnoses of Lucas tumor, his daddy (Joshua) was also diagnosed with a brain tumor, Oligodendroglioma. Daddy went through two surgeries, one asleep and one awake. He will have check up's yearly for the rest of his life, in hopes the tumor does not return.
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Lucas being the age he is, and the size/location's of the mass, he unfortunately cannot under go reduction surgery. Radiation also is not an option due to age and location of the Tumors. As of now, chemo and prayers are our only hope and option.
We spent 10 full days at UCSF Benioff Children’s hospital and got to go home on 9/15/2018. We were able to set up our very first meet and greet with the oncologist at UC Davis on 9/19/2018. We went over all of his chemo options and up coming surgery’s. It was clear that he needed to get a Hickman and a Shunt in order to start the chemo treatment. The Shunt was to help relieve the growing pressure in his head.
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During this time, we are still fighting with Lucas’ eating habits and weight loss (at this point he weighed only 10.5 pounds). Because of his lack of weight gain, we were again admitted into UC Davis on Friday 9/21/2018. We spent the weekend fighting to set up surgery dates and time. Finally, we were able to get the surgey scheduled on 9/25/2018. He successfully got a shunt and Hickman line for the chemo treatment.
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9/27/2018 Lucas started his first dose of chemo, Vinblastine. In one week he will add another type of chemo treatment, Avastin. He will be on these two types of chemo for 1 year.
We are hoping and praying for the best, since in the last three weeks between MRI's the cancerous tumors have grown drastically in size within his brain and spine.
At this point we are praying for a miracle. For this family, he is the only child and only grandchild.
