August 17th, 2014 at Ski Beach there will be a fundraiser for our very own Julia Garmo. It is a Volleyball tournment to not only welcome home Julia from her treatments in New York but an event that will help her continue to pay for her treatments. To know more about Julia and her story, continue to read:
Julia is our happy, bright, beautiful, sweet, charming, and energetic 6 year old girl. She loves school, swimming, reading, playing with her friends and cousins, and one of her biggest passions is soccer. Julia keeps busy with school, playing in a soccer league, and spending time with her family. She is blessed to have 4 other siblings who love her very much. Her siblings in order from oldest to youngest are Isaac, Annabelle, then comes Julia, Matthew, and Sarah.
Julia was born on August 3, 2007. Isaac was 4 at the time and Annabelle was 2 1/2. So we were happy that Annabelle would have a sister to bond with. Julia was always full of smiles, and the sweetest most gentle baby. Even though we had 2 girls, they couldn’t have more opposite personalities. Unlike her older sister, Julia was a very quiet, easygoing girl who started out as a girly girl but quickly turned into the biggest tomboy. She loved any activity that involved being outdoors. As she got older, her Dad and I started to realize that Julia was special in many ways. She was always so caring with her siblings and others around her. Even though she had 4 siblings, she would always pray for “Mommy to have another baby”. That’s how much she loved her baby brother and sister. She was always affectionate and cuddly… constantly wanting hugs and kisses from us. She cared so much she would cry at the drop of a dime whenever she knew mommy or daddy were mad at her. Her cries would break my heart and her smiles can make anyone’s heart melt!
Lately, Julia’s been busy with school, soccer and piano (which she just started in the summer of 2013). A couple months into the school year, Julia started complaining about her neck and said it hurt her. She couldn’t move her neck very well; we thought she had a stiff neck due to a certain way she slept or maybe something she did while playing soccer. The pain would come and go for a couple weeks and we didn’t think much of it until the symptoms started to get worse. She started complaining about her throat and that it hurt to swallow. So I decided to take her to the doctors office to get it checked out. On Wednesday, October 30, the pediatrician said that she wanted to do some blood work and a CT scan. She said it was probably just a muscle, but she wanted to rule anything else out. So we did blood work that same day and made an appt for a CT scan for the following Monday. No one called me back with the lab results so I assumed that was a good sign. By the next day, which was Halloween, Julia could barely move her head and was walking so slow due to her neck pain. She would even groan from pain in the car every time I drove over a bump on the road. I decided I didn’t want to wait until Monday for her scan so I called Children’s Hospital first thing Friday morning and asked if they could fit her in. They told me to bring her in anytime that morning so I did. I left my two kids with a babysitter, (the other 2 were at school) and Julia and I headed to the hospital. I noticed the technician was taking longer than usual doing the scan. We were supposed to go home and get the results of the scan from her primary doctor but we never made it home.
The nurses took Julia and I in a private room and said that the radiologist wanted to discuss the results with us. That’s when I started to freak out. I called my husband and told him I had a bad feeling. I still had high hopes because I kept telling him not to come and to let me talk to them first and see what they had to say, then I would call him back. Well after anxiously waiting in the room for what felt like forever, I finally get a phone call from her doctor telling me that the radiologist suspected something on the scan and in these exact words…they “think it’s the same thing her brother had”. Well that’s when I just lost it… my heart sunk. I couldn’t listen to another word that came out of her mouth after that; I just hung up on her. I called my husband back and told him to come right away. Which wife wants to break the news to her husband, her child’s father, that their daughter has Neuroblastoma, the same disease our firstborn son was diagnosed with 9 yrs earlier?! Which wife has felt so helpless watching her husband cry like a baby over and over again and she can’t do a thing to console him? And she is so numb and in shock from the news that she can’t cry even if she wanted to. I was too busy trying to keep myself from passing out and I had such bad anxiety I had to continue to take deep breaths the rest of that horrible day.
So in a period of 2 weeks, Julia had surgery to remove some tumor that was pushing on her spinal cord, another surgery to insert a permanent catheter, numerous tests and scans, and eventually her first round of chemo all in 1 hospital visit. And that is barely just the beginning of what she will have to endure for the next year or so. As of right now, she is scheduled to get 5 rounds of high dose chemo, a stem cell transplant, radiation, cis-retinoic acid, and immunotherapy. This is just the standard treatment; other treatments might be added depending on how she responds to chemo.
This is our story. This is the beginning of Julia’s journey.