||December 9, 2002
|| Diffuse Pontine Glioma (brainstem tumor)
||Juliana's favorite things can be found on her Facebook page. Search for Julianasjourney in the search bar. She is wearing a pink shirt and clown makeup
|Stuff About Me:
||I received the greatest of Christmas presents on December 9, 2002 when my daughter Juliana Marie was born. She was 6 lbs 14 oz and she looked a lot like me. I was very thrilled to be the new father to a daughter. (Daughters are the funnest to a dad despite all the talk about wanting a son to carry on the name. Sorry sons.)
Juliana and Angie, her mom, spent a little more time in the hospital than is standard because Juliana had some trouble with delivery and had to be invited into this world care of an emergency cesarean.
We took her home with us and after some confused looks at one another, Angie and I got on with the business of being parents. From the start, Juliana was a quiet baby, crying very little. She was rowdiest at night and I don't know anyone that could get her to sleep as a baby. She slept when she was good and ready.
We moved to Hialeah when Juliana was 3 months old. Juliana was on time with all of her developmental milestones except speaking. At first we were not concerned. Juliana was exposed to 2 languages and would catch up. We decided to enroll her in daycare to be around other children and learn from them.
The daycare director referred us to MDPS for an evaluation. We did not realize to what extent she was behind. In 8/2006, she entered her first year of Pre Kindergarten. She greatly improved that first year. She also started speech and occupational therapy privately.
I was very concerned about Juliana's delays. I took her to every different type of doctor out there in an attempt to pinpoint the problem and fix it.
Neurological and genetic testing came up normal. The neurologist ordered an MRI in June 2006 to rule out something called microcephaly. Juliana's head size was smaller than it should be. But because Juliana's head grew to more acceptable amounts I did not go through with the testing.
I went back to her neurologist in March 2007. He urged me again to have the MRI done. Since she was being evaluated again, he felt it would be wise to rule out any medical problem as the cause of her delays.
I was not prepared for June 8, 2007. I was waiting in the waiting room for Juliana to finish what I thought would be a routine procedure. What's the worst that could happen? Mild microcephaly? Juliana having to work twice as hard as other children to understand things? I walked into the room where Juliana was strapped to the table and spoke to the neurologist on the phone. I heard the words brain tumor and felt the world collapse around me. I don't remember much about that morning except arguing profusely with the nurse about Juliana and I going to the main campus of MCH in an ambulance. I wanted to drive her to keep some control....
I met with neuro-oncology and neurosurgery physicians. (Angie was still in the hospital recovering from a serious illness. She would learn of the tumor later.) The tumor was called Diffuse Pontine Glioma. The prognosis was awful. It was the highest likelihood that Juliana would not survive her 8th birthday.
Since the tumor was showing no medical symptoms, I took her home. She had an MRI a month later with no change. Further scans continued to show a stable tumor and she remained symptom-free until 9/2009, more than two years after the first MRI.
Except for that awful scan, I would not have known about the tumor. Juliana was improving in every way. She was learning new things and was speaking better. I thought the tumor has grown all it's going to grow and my daughter will be ok.
In 9/2009, Juliana's left eye started crossing inward. Another MRI was done 10/21/09 and we received an answer about the cause of Juliana's crossed eye-sixth nerve palsey. Everyone was very sad because the tumor is growing. The nightmare clock of Juliana's life was clicking toward a quick finish.
Angie and I agonized over what to do. Juliana's symptoms did not progress. She just had the eye problem. We patched the right eye to help with double vision problems. She was put on Decadron to reduce swelling. I saw my little girl change overnight. Weight gain, moodiness, puffed-out face, and if I thought she had trouble sleeping as a baby...
Juliana started radiation therapy at Jackson Hospital on 1/7/10. She completed 30 treatments finishing on 2/19. I am very proud of her for being a good sport despite having her head bolted to a table under a tight-fitting mask for ten minutes. She never complained.
She began a new level 1 clinical trial at Children's Hospital of Pittsburgh on 4/8/10. She was given two sets of vaccines every 3 weeks until 9/2. Starting 10/14 she received vaccines every 6 weeks. Her last vaccine was 12/30. Further information can be found in her CaringBridge updates of 2011. God Bless.
||I don't have any brothers or sisters.
||My abuela feeds a cat outside the house but my mommy won't let it in the house.
Happy Mail Address:
|Happy Mail Address:
||8314 NW 144th St
Miami Lakes, FL 33016-5741