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Vincent The Conqueror

$37,787 of $50,000 goal

Raised by 679 people in 13 months
Created July 19, 2018
www.facebook.com/vincenttheconqueror 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

We post daily updates to Vincent's Facebook page www.facebook.com/vincenttheconqueror 
#VincenttheConqueror #victory4vincent#pediatricbraincancerawareness #ATRT #noonefightsalone 

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The past couple months have been filled with researching options and reaching out to experts across the country to get their opinion on what to do. While we have been waiting for answers, we have been doing our best to live in our new normal and enjoy every minute of having Vincent home.

He has continued to go to out-patient PT, OT, and Speech Therapy and has services in home too. He has been working hard to get strong and catch up on some milestones. He is still very behind developmentally and does not crawl, scooch, or walk. His left arm has some improvement but he still doesn't use his left hand at all. He is still exclusively fed through an ng tube but has been working on tasting foods to hopefully get him interested in eating. We still do not know what his disabilities will be long term but are pretty sure he will have some mobility issues and will not regain full use of his hand. This presents us with a whole additional set of things to manage and consider for Vincent.

We finally have come to a decision on our next treatment steps. Vincent will undergo a stem cell transplant. This will be the harshest treatment he has been through and it comes with significant risks. It will be a long hospitalization, 6-8 weeks with no complications, on isolation with a ton of restrictions. We are burned out and still have a long way to go.

Giving higher doses of chemotherapy might be more effective in treating cancers, but normally this can’t be done because it would cause severe damage to the bone marrow, where new blood cells are made. This could lead to life-threatening shortages of blood cells.
A way to get around this problem is by giving the high-dose treatments, then replacing the patient’s bone marrow cells by giving them new blood-making cells (called stem cells). This is known as a stem cell transplant (SCT).

Vincent's own stem cells will be used for the transplant. These stem cells were collected in a process called apheresis last week and Vincent was a rock star as usual.
To prepare for stem cell collection, we had to give Vincent a injections twice a day with a medicine called G-CSF that helped his bone marrow make more white blood cells and helped stem cells move into the bloodstream.


On Aug 6th, Vincent will be admitted again and get high-dose chemotherapy first. This destroys the cancer cells in the body, as well as the normal cells in the bone marrow. After high-dose chemotherapy, the frozen stem cells are thawed and given as a blood transfusion. The stem cells travel through the bloodstream and settle in the bone marrow.
Usually within a couple of weeks, the stem cells begin making new white blood cells. This is later followed by new platelet production and new red blood cell production. Until this happens, he will be at high risk of infection because of a low white blood cell count, as well as bleeding because of a low platelet count. To help lower the risk of infection, he will be in isolation and we must wear protective clothing. Blood and platelet transfusions and treatment with IV antibiotics may also be used to help prevent or treat infections or bleeding problems. He will also need decontamination showers every 4 hours for 4 days

We could use your support and prayers. We will need to pay for gas, parking, and meals daily while living at the hospital and when he comes home we will need to put certain measures in place in our home to keep him safe as he will be severely immune compromised for a year after transplant.

We appreciate everyone who has been in our corner the past 13 months. The days are dark but you have lit our way. We are beyond grateful.

More info on Stem Cell Transplant

A SCT is a complex treatment that can cause life-threatening side effects.

The possible side effects from SCT are generally divided into early and long-term effects.

The early complications and side effects are basically the same as those caused by high-dose chemotherapy and can be severe. They are caused by damage to the bone marrow and other quickly growing tissues of the body, and can include:

Low blood cell counts (with fatigue and increased risk of infection and bleeding)

Nausea and vomiting

Loss of appetite

Mouth sores

Diarrhea

Hair loss

Problems with liver- VOD

One of the most common and serious short-term effects is an increased risk for serious infections. Antibiotics are often given to try to prevent this. Other side effects, like low red blood cell and platelet counts, might require blood product transfusions or other treatments.

Some complications and side effects can last for a long time or might not occur until months or years after the transplant. These can include:

Damage to the heart or lungs

Problems with the thyroid or other hormone-making glands

Problems with fertility

Damage to bones or problems with bone growth

Development of another cancer (including leukemia) years later

Hearing loss



#VincenttheConqueror #victory4vincent #pediatricbraincancerawareness #ATRT #childhoodcancerawareness #cancersucks #findacure #thechildrenarewaiting #morethan4 #babieswithcancer #kidsgetcancertoo #braintumor #graymatters #gogold #becausekidscantfightcanceralone #WEMUSTDOBETTER #manifestamiracle #whynotvincent #greymatters #prayforvincent #fightvincentfight #braincancer
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We met with Vincent's neuro oncologist last week and I've been at a loss for what to say and I've felt a little paralyzed in my thought processing.

We discussed a lot of information that is difficult to summarize but I'm going to do my best to be concise in explaining it.

The brain tumor board met on Wednesday to discuss Vincent's case. Basically they are stumped and do not know what to do going forward. There is a unanimous decision that he can not have the Dactinomycin (chemo that caused the toxicity) and we agree, but we don't think just removing it from his protocol and continuing with the other drugs is the right move either. The chemo drugs are given in a specific combination and sequence to be effective in killing the cancer cells. Removing one drug alters the protocol's effectiveness. He also can not receive another chemo drug (vincristine) until his bilirubin is normal which could take months. On top of that, we already dose reduced another drug (cyclophosphamide) because it was causing too much bone marrow injury resulting in dangerously low platelet levels every cycle. By removing drugs and reducing dosages we're now in a position where our protocol is no longer going to be effective against his cancer.

So no one knows what to do. Vincent has always been unique, requiring us to think outside the box and this is no exception. Our oncologist is reaching out to other experts for second opinions and we are reaching out to our personal connections in the oncology world. We are also meeting with radiation oncology next week to hear what they have to say. No one wants to radiate Vincent's brain now, he is too young, but we need to hear what they have to say even if we are almost sure we will not radiate now.

I have also been in contact with another ATRT mom who's child also had liver toxicity from Dactinomycin almost 10 years ago and discussed what they did and our oncologist is contacting her oncologist.

Vincent will be getting an MRI on Tuesday. If there is any disease on this scan, Vincent's situation will be much more serious and we will literally be scrambling for options. We are praying for a clear scan, for the Doctors to find answers, and for our ability to continue to make decisions in Vincent's best interest.

This is so very hard and I feel so incredibly sad. To have come this far and now be in limbo is so scary. To know there is no path forward and we need to blaze our own trail is nerve wracking. We dont know what that trail will be .. .. it could be something experimental, it could mean traveling out of state, it could mean separating our family even more..... we just don't know. We are remaining optimistic but also realistic. This is the worst shade of gray to be in for me. The unknown, no answers, tons of questions.... my anxiety is in overdrive. I'm trying not to let my fear take over my head space. Easier said than done.

Vincent is feeling good, happy, and continuing to have improvement in his liver function.

Please keep praying for and sending love to Vincent. I know you will, but I don't know what else to say.

This is pediatric brain cancer. This is why we need more funding for research. We should not be in this position. We should not have to poison our son to the brink of death to try to save him to then be out of options.

T-shirt Fundraiser
https://www.bonfire.com/victory4vincent-gear/

We post daily updates on Vincent's Facebook page www.facebook.com/vincenttheconqueror

#WEMUSTDOBETTER #VincenttheConqueror #victory4vincent #pediatricbraincancerawareness #ATRT #childhoodcancerawareness #cancersucks #findacure #thechildrenarewaiting #morethan4 #babieswithcancer #kidsgetcancertoo #braintumor #graymatters #gogold #becausekidscantfightcanceralone #manifestamiracle #whynotvincent #greymatters #prayforvincent #chemo #cancer #chemosideeffects #fightvincentfight #braintumorawarenessmonth #braincancer #btam #gograyinmay
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Vincent has been moved from the PICU to the oncology floor. His status is still critical but he is stable and the oncology feels they can manage his condition. We are now in a waiting game to see how much liver function he will have once he recovers. He is still on oxygen and still has an abdominal drain putting out fluid from his belly. He is exhausted from fighting to stop his body from dying. He is still getting daily platelet and plasma transfusions. He still has a long way to go and we aren't sure if there will be a path to move forward on to treat his cancer. Please continue to pray and send us positive vibes.

Thank you.
#VincenttheConqueror #victory4vincent
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We are so sad to provide this update.

Vincent's situation has taken a sudden, rapid turn for the worse. On April 9th, he spiked a fever and was admitted to the ER for what we thought was his regular neutropenic fever. In less than 24 hours Vincent developed something called VOD which is a life-threatening complication from chemotherapy. He is now in acute liver failure in the PICU. His abdomen started filling with fluid and he had a drain inserted in his abdomen to remove fluid. He is on a ventilator because both lungs collapsed from the pressure of his liver and abdominal fluid.

The doctors do not know if he will recover from this setback. His liver functioning is not following the pattern they expect to see in VOD and no one knows why. He is fighting so hard. He was beating his cancer and now he is fighting for his life because of the treatment he received. This is not fair! We are heartbroken and scared out of our minds. Please pray for Vincent's liver to recover and for his healing. Not having any answers is torture.

We are constantly updating on his status on our Facebook page if you would like to keep up with his fight please follow www.facebook.com/vincenttheconqueror

Thank you for the love and support.

#VincenttheConqueror #victory4vincent
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$37,787 of $50,000 goal

Raised by 679 people in 13 months
Created July 19, 2018
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