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Vincent The Conqueror

$23,470 of $50,000 goal

Raised by 374 people in 8 months
At 3 months Vincent started tilting his head to the right and the pediatrician thought he had a common condition called torticollis and sent him to physical therapy. After about 2 weeks in physical therapy and some of our own research we started to doubt that torticollis was the issue. We went back to the pediatrician and realized that Vincent's head had grown very rapidly over the past 2 months. We were immediately referred to CHOP Neurology where they performed an MRI and told us that he had 2 brain tumors and they were almost positive they were malignant. We felt like our world was ripped out from under us. The next day Vincent underwent a 9.5 hour brain surgery to reduce the pressure on his brain and remove as much of one of the tumors as possible, one of the tumors is inoperable because it is located on his brain stem.

The surgeon was only able to remove less than 50% of the large tumor and we were left to wait for the biopsy results while Vincent recovered in the PICU. The biopsy results came back and it was worse than we imagined, Vincent has atypical rhabdoid tumors (ATRT), a very rare & aggressive type of brain cancer with a very dismal prognosis particularly for children diagnosed under 6 months of age. There are no clinical studies available and limited treatment options. High dose intensive chemotherapy is the only option, radiation has been shown to be more effective but children under 2 can suffer serious effects such as brain damage so it is not an option in Vincent's situation. He has also lost some motor function in his left arm and leg from the surgery.

Vincent had to have a VP Shunt permanently placed in his brain to drain the fluid and keep the pressure down. The original shunt malfunctioned and he had to have another surgery to revise it. He also had a port placed in his chest for administering the chemo intravenously. He spent 3 weeks in the PICU then transferred to the oncology floor to receive his first cycle of intense IV chemotherapy. 

We have reached out to specialists across the country who are working on Vincent's case and we are holding onto hope that he will defy the odds.

After 4 weeks at CHOP Vincent was discharged to spend a few days at home before the next cycle  of chemo starts. He has to go to the oncology clinic at CHOP twice a week to check his blood counts and receive any required blood, platelet, or electrolyte infusions. 9 out of 10 kids end up being readmitted due to complications. 

We have been humbled by the amount of support we have received from our family, friends, community, past classmates, and even strangers. We want to thank everyone who has reached out to us with offers to help, donations, and words of support. We are focusing on getting through the next 5 minutes over and over. Please continue to pray for Vincent and lift him in love and positive vibes.


Thank you from the bottom of our hearts ~ Natalie, Ramin, Mina, & Vincent

#VincenttheConqueror #victory4vincent#pediatricbraincancerawareness #ATRT #noonefightsalone 

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Vincent turned 1 on Feb 12th! We were so happy to celebrate this miracle milestone with our family and friends.

Vincent had an MRI on March 5th and we are happy to report that it was still clear and there is no evidence of disease (NED). This doesn't mean that he is cured but it means that right now there are no cancer cells detected on imaging. He still has a long way to go and relapse is still very likely. He will continue to receive chemotherapy for approximately 9 more months and will have an MRI every 2 months.

He just completed his 3rd cycle of "maintenance" chemotherapy. He is still having a hard time with recovery and is requiring more and more platelet transfusions every cycle. The oncologist is now considering reducing the dosage of one of his chemo drugs because the risk of spontaneous bleeding is becoming a real concern.

He also recently had an audiogram to check his hearing because one of the chemo drugs (cisplatin) is known to cause hearing loss. All of his other hearing tests were normal but this last one showed a loss in high frequency pitches. He will most likely need hearing aids at some point and they will continue to monitor his hearing. This is just another reminder that the chemo we are hoping saves his life is also destroying his healthy cells potentially causing a lifetime of complications.

Please continue to send your prayers. We are so grateful to everyone who has supported us these past 9 months. We will not stop fighting.

#VincenttheConqueror #victory4vincent
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Happy New Year!

We want to thank everyone who supported us over the past 6 months, your love, prayers, words of encouragement, and donations have been a blessing to us and help us to continue fighting this battle.

Vincent completed the 1st 6 cycles of chemotherapy (induction) in November. The scan after induction showed that the tumors were responding to the chemo and shrinking but they were still there and we had used up all the big gun chemo. Radiation still isn't an option because of Vincent's age and metastasis. We were offered the option of moving on to a lower dose maintenance chemotherapy or attempting to surgically remove both tumors and then follow up with maintenance chemo. After talking to our neurosurgeon and weighing all the risks, we decided surgery would give Vincent the best chance of beating this. On Dec 12th & 17th he underwent risky craniotomies which were successful for 2 gross total resections! This is great news and better than we could have imagined. 6 months ago we were offered a palliative care option. The 2nd surgery was tough on Vincent and he's having some issues recovering but he is going to intense rehab 5 days a week and making progress. He will start maintenance IV chemotherapy later this week and will continue that for about 12 months with scans every 2 months.

Please continue to send your love and prayers. This war is far from over. These are the specific things we ask you to help us manifest by sending love, light, prayers, & positivity to Vincent:
●That Vincent tolerates the maintenance chemo well, he is thriving and we do not want any set backs.
●That the maintenance chemo does its job and keeps the cancer cells away.
●NO recurrence EVER!
●For complete recovery from the side effects of surgery
●For continued progression and catch up of developmental milestones
●That he starts to eat by mouth
●For his comfort & happiness.

Thank you all so much for being part of Vincent's army. We hope your 2019 is full of health, love, & family.
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Vincent is on cycle 5 of his induction chemotherapy protocol. He will have 1 induction cycle left after this. We aren't sure what the next step in his treatment will be, typically children receive radiation after induction chemo but that is not an option for Vincent because of his age. He had an MRI 2 weeks ago to determine if the tumors were getting smaller but they weren't able to get a clear image because his ventricles were enlarged and he had hydrocephalus from a shunt malfunction. They moved him right to the OR for shunt surgery. He will have a full brain and spine MRI after the last induction chemo to restage the disease. Although we arent sure how much the tumors have shrunk, we do know that it isn't much and there is still significant tumor. We are still consulting with experts across the country to determine what we need to do next. ATRT is so aggressive and resistant to treatment that the options are very limited. We do not want to be told there are no options left. We continue to pray and hope for a miracle.

Vincent continues to be a happy baby overall which is unbelievable considering what he has been through. He's the toughest little fighter and he charms all the nurses and doctors. These past almost 4 months have been the most painful and difficult situation anyone could imagine. We are literally living a nightmare. Please continue to pray and help us manifest a miracle. If you can donate, everything helps. We have not been working throughout this ordeal because Vincent needs us by his side to fight with him.
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Today Vincent is 6 months old! Happy 1/2 birthday Vincent.

We were hoping to celebrate at home with our traditional family Sunday night dinner but unfortunately we are still in the hospital. Vincent is having a really rough time from the 2nd cycle of chemo. His blood & electrolyte counts have bottomed out and he's having numerous infusions to try to bring them up. He's in a lot of pain from the mucositis (sores in his mouth and esophagus) from the chemo. He's now receiving TPN nutrition because he can't keep anything in his belly. He's been running fevers and feeling pretty yucky overall. We are hoping he turns a corner soon so we can see his beautiful smile again. Please keep the prayers and love coming. Thank you for all the support.
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Raised by 374 people in 8 months
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