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Help Ben Fight DIPG Brain Tumor!

$42,456 of $50,000 goal

Raised by 516 people in 8 months
No Longer Accepting Donations
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Created September 17, 2018
Team Benjamin! Just Keep Swimming
on behalf of Gina Hatzivasilis
A couple weeks ago, Benjamin was a happy, healthy, 7-year-old boy soaking in every remaining moment of summer vacation playing with his twin sister Olivia, swimming with his grandparents, showing off his dancing skills (excellent flosser!), having sleepovers with his cousins Emma & Cole, Facetiming with his cousin Sophie, playing Fortnite, and spending time with his family and friends.

And then, within days, he wasn't.

Seemingly out of nowhere, he experienced headaches and unrelenting tiredness which led to a trip to urgent care, a CT scan, an airlifted trip to Children's Hospital in Philadelphia, and devastating news in the form of a shocking diagnosis:

Benjamin has diffuse intrinsic pontine glioma (DIPG), an aggressive type of childhood cancerous tumor that forms in the brain stem. 

DIPG is rare (only 300 US cases per year) and is incredibly difficult to treat given the tricky placement of the tumor. 

At this point, his treatment options are limited and operating isn't an option. 

The last two weeks have been nothing short of a nightmare but Benjamin has been and will continue to be a fighter! He and his twin sister (Olivia) conquered being born prematurely at 28 weeks weighing under 2 lbs each. They've been inseparable ever since. 

HOW YOU CAN HELP

As he and his family battle this, they will need help and that's why we've launched this campaign. 

If you can do ANY of the following things, it will make a huge difference during this difficult time:

1. Make a monetary donation.

2. Share this campaign on social media or by email with anyone and everyone you know who may be able to help.

3. Send Benjamin a card, visit him in person, make a video for him, keep him in your prayers, and send him messages of encouragement - he loves company!

All donations will be used to help cover medical expenses, travel and lodging during medical procedures, treatments and clinical trials, accommodations to bring Benjamin home, and necessary house improvements/updates to allow him to live comfortably outside the hospital.

NEXT STEPS FOR BENJAMIN

Benjamin has endured a marathon of surgeries and procedures in hopes of any short-term relief for managing pain, head swelling, and other symptoms from the aggressive tumor. Some were successful, and some were not. A shunt was put in to provide relief from the fluid pressure build up but may have caused him to lose control of his right side (arm and leg). Doctors are unsure what the root cause of this is, or how much functioning he will get back. 

He will start radiation in Philadelphia within a week. Once a day, Monday thru Friday, he will receive radiation for six weeks straight. 

If he responds positively, his symptoms should begin to lessen within one month. Benjamin's family is hoping and praying for a miracle. They are cherishing every second they experience with their happy and cheerful boy. The family hopes to share Benjamin's CHOP files with any reputable leading institution for clinical trial consideration in hopes of spending many more years together. 

Benjamin's family is all in and will do whatever it takes to make their little boy better. 

This campaign was created by Benjamin's aunt and uncle in hopes of making it as easy and comfortable for Benjamin and his family during this terribly difficult time. 

Feel free to share questions, personal stories, and any/all relevant information that may help provide guidance during this difficult time. 

Benjamin and his family thank you in advance for your support, love, and encouragement! 

As his family would say during the difficulties he endured when he was born... JUST KEEP SWIMMING! 

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Benjamin & Olivia born at 28 weeks and under 2 lbs each!
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Benjamin & Mommy 
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Benjamin & Daddy 
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Benjamin & Nouna 
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Benjamin had a great weekend spending time with family, friends, and supporters! His spirits and energy were in full gear reading the hundreds of cards sent his way and they definitely helped him feel better. His friends stopped by to play Minecraft with him too :) The family can't thank everyone enough for the kind words of encouragement, their neighbors and community helping with chores, meals, and visits. We're nearly there in reaching our goal of $50,000 to help Benjamin and his family during this terribly difficult time. Please share the campaign if you haven't already.
#BelieveInBenjamin
#JustKeepSwimming
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Goal Setting

I was reflecting on what drives Benjamin to get stuff done (other than food), and like many of us he likes to have clear goals - what do I need to do and by when. I've begun asking him each morning what he wants to get done today and we document it. Throughout the day we refer back to the list and check off what has been accomplished. While not perfect, it has been a good way to motivate him to work on his strength, mobility, and lift his spirits.

Bringing Benjamin Home

Benjamin was technically discharged from CHOP on September 21, but we brought him home on September 22. He was eligible for in-patient PT/OT services at the Seashore House at CHOP. This would have included therapy services from 9AM - 3PM M-F, in addition to his radiation. The kicker was that he would have to share a room with another child and it wasn't quite parent or family friendly to be there. We chose to decline these services so Benjamin could be in the comforts of his own home and have visitors coming in and out freely.

Benjamin's reception home could not have been more perfect. We had family, friends and neighbors lining the driveway welcoming him home. Visitors joined us throughout the day to meet and hang out with Benjamin.

When I was driving home from CHOP over the weekend, my brother in law said that the next 24-48 hours was going to be tough on me and to be prepared. I didn't quite understand what he meant at the time but now I do. While having him home has been wonderful, it is different. No longer can Benjamin do all the things he used to do. He has always been a very independent boy - taking care of himself, his sister, and heck even me sometimes! And now, everything he wants/needs to do has to be facilitated by an adult (walking to the bathroom, eating, getting in a chair, repositioning, drinking, playing etc). It's almost like having a newborn again, but one who can vocalize what they need and is self aware. We've started to make some changes in my home to adapt to our new normal i.e. my office has become his bedroom. We will continue to learn and adapt.

Treatment: One of the most stressful aspects of this diagnosis is that parents are forced into making important and complex decisions early in the diagnosis, while still trying to make sense of what happened and the shock of the diagnosis. As a parent, you want to be the best advocate for your child and fight like hell. You want to learn everything you can on your own and be informed. However, I wasn't able to do this over the last 2 weeks. I couldn't hear the words or want to make decisions. I just wanted to be with Benjamin and help him the best way I knew how - being his mom.

In the background, a group of people took it upon themselves to begin researching and compiling information for me to review when ready. Now we are working with YooRi Kim, Scientific Officer, of the Gilbert Foundation who is researching, connecting, and facilitating conversations with us and the thought leaders in this space to learn about experimental treatments. She is there to challenge the thinking of doctors and researchers, and be a patient advocate. I am so thankful that my brother in law connected us with her. Everyone needs a patient advocate who is going through this type of experience.

We will begin proton radiation on Thursday at the University of Pennsylvania. He will receive radiation M-F for 6 weeks. In addition, we will be doing PT/OT down at CHOP and will find out on Friday what the schedule will be. During the 6 weeks, we will be splitting time between Philly and Lancaster.

Lastly but most importantly, thank you so much for everyone who continue to show up for us every day in their own way. It lifts our spirits and I couldn't get through this without you all.
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Friends, family, and incredible supporters! Yesterday was Benjamin’s best day yet for two reasons:
1.) He was brought home from the hospital and reunited with his sister, Olivia.
2.) We are over halfway to our total fundraising goal. Thank you for the incredible outpour of support - it’s helping tremendously.

Here’s an update from Benjamin’s nouna (aunt):
Our sweet Benjamin came home today and was greeted by the love of family and friends. His first day back consisted of lots of his favorite things: food, Xbox, and more food. From mom’s homemade chili, Theo tasos PB oreo ice cream, to four slices of Hot Z pizza - I guess you can say he ate real good today!

We are excited to have Benjamin home, but still have a long road in front of us. We appreciate everyone keeping Benjamin and his family in your daily prayers
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Benjamin is continuing to gain strength and eating more every day! Tomorrow's requests include strawberries and caramel apples!

Thank you for everyone's support. Please keep sharing this campaign to spread awareness about Benjamin and DIPG! #BelieveInBenjamin
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$42,456 of $50,000 goal

Raised by 516 people in 8 months
No Longer Accepting Donations
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Created September 17, 2018
Team Benjamin! Just Keep Swimming
on behalf of Gina Hatzivasilis
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