Victory 4 Vincent

For those who are new to Vincent's journey and those who have asked how you can help: 1. PRAY FOR VINCENT. Send love, good vibes, and positivity to him. Help us manifest a miracle by flowing healing energy to him in any way that feels right for you. 2. DONATE BLOOD & PLATELETS- Vincent would not be alive without the generosity of blood donors. Blood products can not be manufactured, replicated, or substituted. It must come from people. Each blood donation saves 3 li...Continue reading

Today was emotional. I cried a lot at the simplest things. We watched Christmas movies and I would tear up and look over at Ramin and see that his eyes were "sweating" too then we would both laugh at ourselves. It's Christmas Eve. Both of my children are in bed upstairs. I'm watching It's a Wonderful Life with Ramin. We will be together tomorrow. That's what matters. Thank you so much to everyone who helped us to make sure Mina & Vincent have a great Christmas morning. ... Strange, isn’t it? Each man’s life touches so many other lives. When he isn’t around he leaves an awful hole, doesn’t he? - It's a Wonderful Life I hope we have touched your lives as much as you all have touched ours. We wish you all a very merry Christmas! #vincenttheconqueror #victory4vincent #ATRT #braincancer #fightvincentfight #prayforvincent #manifestamiracle

I have no update to share on my MRI concerns. I spoke with some people today who are reviewing things and I hope to know more tomorrow. I can't believe tomorrow is Christmas Eve. It doesn't feel like it at all. I want so badly to be filled with the spirit of the season but it's just not happening. This year has been hard. For us. For everyone. I was hoping that the new year was going to be better but we already have some new challenges lined up for January. I wish our fam...ily could catch a break and cancer would leave us all alone. Our family could use some extra prayers. Here's a video of Vincent's new trick! #vincenttheconqueror #victory4vincent #ATRT #braincancer #fightvincentfight #prayforvincent #manifestamiracle #whynotvincent

Today Vincent had speech therapy and a visit to the oncology clinic. I am happy to report that his in-person speech therapy sessions will be extended and he will continue working on improving his communication. His labs looked good at clinic and his platelets even came up a little, which we think is because he had to skip 2 medication doses this week for general anesthesia. He received his infusion which always makes him tired and a little grumpy for the rest of the day. ... The morning was going well until I finally got my hands on Vincent's actual MRI report, there was an issue getting it to release in the system so we couldn't view it last week, the area of enhancement in his spine that I mentioned was being considered treatment effect is concerning me. I found an error in the report that stated Vincent had radiation, if there is an enhancement that the radiologist thinks is radiation treatment effect but Vincent didn't have radiation, then that is a problem. I have emailed his oncologist. In the meantime, I'm diving deeper into the rabbit hole. I've seen this happen with too many ATRT kids, something is nothing until it's too late. Not on my watch. I'm not taking any chances. I want clarification, further explanation. And possibly an MRI sooner then 6 weeks Please pray that whatever this enhancement area is, it is not cancer. #vincenttheconqueror #victory4vincent #ATRT #braincancer #fightvincentfight #prayforvincent #manifestamiracle #whynotvincent

We had a good weekend. My mom and I baked our traditional sticky buns, Vincent felt good, Ramin is almost finished building our new toy cabinet, and Mina spent time with her aunt. I can't believe Christmas is in just a few days, it really doesn't feel like it at all this year. Thank you so much to everyone who has sent us a card, gift, or anything else to help us make this a great holiday. We have enjoyed opening your cards, especially those that have your family photos ...on them. Tomorrow Vincent has an evaluation with a vision specialist, on Tuesday he has speech therapy then oncology clinic for labs and an infusion, and on Wednesday he has physical therapy. We are hoping his labs are all stable and we get a break from the clinic until after the new year. His next lumbar puncture is Jan 7th. Don't stop praying. #vincenttheconqueror #victory4vincent #ATRT #braincancer #fightvincentfight #prayforvincent #manifestamiracle

Today we had a very special visit that was a huge surprise! I was actually covered in flour when the doorbell rang so pardon my appearance in this photo. But these girls, made our day! Hannah is a cancer warrior too and one of my niece's friends and we haven't seen her in-person in awhile so it was wonderful to see how well she is doing, I wanted to cry because I was so happy to see her so healthy. We love her and her warrior family. These girls were introduced to the world o...f pediatric cancer when their friends were diagnosed, Hannah & our brain tumor buddy Lily Walker, and they decided they weren't going to just sit back and wait for someone else to do something. They started Beads For A Cure and started fundraising for pediatric cancer research and they have done an incredible job. This holiday season they also provided gifts to several families, including ours. We were floored with all the gifts these girls brought. They are doing such great things. They did a fantastic job picking out gifts for Vincent and Mina, but really hit the nail on the head with Mina's gifts. It was clear they took the time to figure out what she would love! Thank you so much Hannah, Lily W., Lily E., Lucy, Sydney, & Colleen I can't wait to see what you girls accomplish in your futures. #vincenttheconqueror #victory4vincent #hhstrikingoutcancer #teamlily #noonefightsalone #delcostrong #kidshelpingkids

I was asked by Fourth and Gold to write a piece on some of our experiences with health insurance throughout Vincent's battle. I could write a chapter on this subject but instead I wrote this. Please take a minute to read, share, & spread awareness.... #vincenttheconqueror #ATRT #gogold #morethan4