Connor Cures

Connor Cures A Foundation to help raise funds to cure pediatric cancer.
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Yesterday was the 7th anniversary of Connor's diagnosis. I just want to re-tell his story.  It has been a long 7 years a...
12/17/2019

Yesterday was the 7th anniversary of Connor's diagnosis. I just want to re-tell his story. It has been a long 7 years and we have learned so much. While time doesn't heal all wounds, it does softens the pain - most of the time. That said, there isn't a day where we don't think about him and what he has meant to our family. We are very lucky to have 3 other amazing, beautiful kids and losing Connor has given us a lot of perspective on life. He was loved by many and his memory lives on.

To continue supporting finding a cure for all pediatric cancers, Connor Cures is joining forces with The Max Cure Foundation. As the year comes to a close, please continue to help Connor cure cancer by supporting MCF. Check them out here:

https://maxcurefoundation.org

Donate here:

https://maxcurefoundation.org/donations/dec/

Connor's Story:

Connor Robert White was born on July 6, 2012. He was a happy, amazing boy. He smiled all the time and loved watching his older brothers. At 4 and 1/2 months, something changed.

On November 22, 2012 - Thanksgiving Day - our 4 and 1/2 month old son Connor started getting sick - vomiting in the morning, but nothing else. It happened 3 out of 4 days that weekend, but after he got sick, he was happy and ready to eat again. We consulted his doctors, but we didn't think much of it because it stopped.

Friends visited the following weekend and he threw up again - unfortunately all over one of them. He became progressively worse, barely able to keep anything in, even when we fed him little bits via a dropper. We took him to the doctor and ER twice that week due to dehydration. He had a light fever, so we thought it was a stomach bug. He was able to keep his fluids down after getting some zofran to help with the vomiting. When we ran out of zofran the following weekend, he started to get sick again.

On Thursday, December 13th, we asked to get an ultrasound to determine if he had pyloric stenosis - he did not.

On Saturday night, December 15th, he was continuing to vomit, so Beth and I basially stayed up with him and kept him propped up in our bed that night. We decided we were going to the ER and we were not going to leaving until we had a diagnosis and was hopefully admitted to try to help him.

On the morning of Sunday, December 16th, we went back to the ER at Inova Fairfax in the late morning and were finally admitted early that evening with a diagnosis of gallstones.

That evening, after being admitted, Dr. Port took a look at Connor. She noticed that he wasn't holding his head up enough for a 5 and 1/2 month old, so she decided to run a cat scan. It was late, so I went home to get some sleep not thinking it was anything serious with Beth staying with him overnight. I received a call from Beth around midnight that I had to come back. She gave the news that Connor had a brain tumor. We didn't know the details, but regardless we were terrified.

Around 230am on Monday morning, they inserted a drain to relieve the pressure from the fluid buildup. They did an MRI and didn't find any other tumors, so that was a little bit of good news.

On Wednesday, December 19th, Dr. Myseros, his surgeon, performed brain surgery on our baby to remove his tumor. We found out that the tumor was large - about 5 centimeters; it was in his cerebellum (posterior fossa); and it was blocking his brain fluid from draining down his spinal cord - therefore causing many of his other symptoms. He determined that it was cancerous, likely AT/RT (Atypical teratoid rhabdoid tumor) and they remove all of it except a few cells from his brain stem. They did not want to touch his brain stem, as that controls many of the bodily functions. Dr. Myseros is one of the best at what he does, he's part of the world renowned team from Children's National Medical Center. The procedure took about 5 hours.

Following surgery, Connor spent about a week in the PICU and then moved on to the Pediatric Oncology/Hemotology section of the hospital. When the pathology on the tumor came back, it confirmed what Dr. Myseros thought during the surgery - it was an AT/RT (Atypical Teratoid Rhabdoid Tumor) tumor - one of the most aggressive and deadly brain tumors a child could have.

In the PICU, his nurse Katie and in the O/H section, his nurses Brooke, Kristen and Victoria were just a few of his angels through his stays there. They were unbelievable in handling not only him, but also his parents and streams of family and friends who came to visit Connor. We were amazingly lucky to get one of the top Pediatric Oncologist in the area, Dr. Jeff Knipstein. Jeff spent the last 4 years specifically studying AT/RT brain tumors. Jeff was not only Connor's best hope, but also one of the best people we've ever met. If there was anyone who could have helped Connor, it was Jeff and the team of nurses.

From the time he started getting sick to the day he passed away was a mere 6 and 1/2 weeks. He was exactly 6 months old the day he passed away. We had the best doctors and nurses you could find anywhere. I don't know many 6 month olds who were loved more than Connor.

He started showing symptoms on Thanksgiving Day and passed away 6 and 1/2 weeks later on January 6, 2012 at the age of 6 months old. Cancer shows no mercy.

Connor passed away on the 6th of January.  Connor was born on the 6th of July.  In his honor and today being the 6th of ...
09/07/2017

Connor passed away on the 6th of January. Connor was born on the 6th of July. In his honor and today being the 6th of September - Pediatric Cancer Awareness month, we are joining forces with the Max Cure Foundation to start a new fund with $100k for pediatric cancer research. More to come soon!

We have a major announcement to make that will further power the research and mission of the Max Cure Foundation. From Beth and Henry White, founders of Connor Cures:

"Today, we would like to announce the formation of a new fund to support pediatric cancer research. Connor Cures, in conjunction with the Max Cure Foundation, is forming the Connor Fund within the Max Cure Foundation. Today, we will be providing an initial investment of $100,000 into the Connor Fund. We are announcing this today to honor Connor Robert White as part of pediatric cancer awareness month, since he was both born and passed away on the 6th of the month. By the end of 2017, Connor Cures intends to cease operations and further fund the Connor Fund within Max Cure with any funds remaining. Connor Cures chose the Max Cure Foundation as their partner to fund pediatric cancer research and increase awareness because of the similarities of the two foundations missions. We look forward to working together and curing pediatric cancer!"

Executive director Jonathan Agin: "We are humbled and honored to be working together to establish the Connor Fund within the Max Cure Foundation. We have an ambitious research agenda and this announcement further supports the reach of our research funding. To be able to do it together with Beth and Henry to honor Connor is truly meaningful."

Stay tuned for further details and announcements.

Loving our boys a little extra today.
07/07/2016

Loving our boys a little extra today.

Today is Connor's 4th birthday, but it is also exactly three and a half years since we lost him.  Everyone says, time he...
07/06/2016

Today is Connor's 4th birthday, but it is also exactly three and a half years since we lost him. Everyone says, time heals all wounds. While time definitely makes it easier to manage the emotions, the wound is still large. As you know, we are trying to Help Connor Cure Cancer. If you have any ability at all to make a donation in honor of Connor or anyone else who has been affected by cancer, it would be greatly appreciated. $5, $10 or whatever you can do.

http://www.connorcures.org/donate

Please also visit some of our friends in the Pediatric Cancer World:

https://maxcurefoundation.org

https://www.stillbrave.org

These are some people doing amazing things to help kids with cancer.

We love and miss you Connor!

Our 3rd Connor Cures Gala and Silent Auction is less than 1 week away - April 9th.   Check out some of our great items t...
04/03/2016
Connor Cures - BiddingForGood Fundraising Auction

Our 3rd Connor Cures Gala and Silent Auction is less than 1 week away - April 9th. Check out some of our great items to bid on. All online, so you don't have to be there to win. Bidding ends at 845pm on the 9th!

Http://www.connorcures.org/auction

May the highest bidder win!

Why we are trying to Help Connor Cure Cancer: On January 6th, 2013, Connor Robert White died at exactly 6 months old after a short battle with brain cancer. He started getting sick just 6 and 1/2 half weeks prior, and passed away only 3 weeks after being diagnosed. He had a very rare and aggressive…

Friends, we need your help.  Our next Gala is coming up in just over 2 months on April 9th, 2016 at the Mayflower Hotel ...
02/03/2016

Friends, we need your help. Our next Gala is coming up in just over 2 months on April 9th, 2016 at the Mayflower Hotel in Washington, DC. We need your help gathering auction items and selling sponsorships - especially ones that include seats at the Gala. If you can sponsor us, provide a great auction items and/or can call on other people who may have an auction item and/or would be willing to sponsor us, we would greatly appreciate it. As most who have attended will tell you, we do our best to make it a really fun evening celebrating children who need our help. All proceeds will go directly to pediatric cancer research.

Our goal is to have over 200 attendees this year. To get there, please share this with your friends, family and co-workers to help us make this year's event another huge success.

For details on the auction and sponsorships, check out our website:

http://www.connorcures.org/2016-gala-details/

Thank you again for continuing to Help Connor Cure Cancer!

01/06/2016

Today is a good day, but 3 years ago today, we experienced the worst day of any parent’s life, we lost Connor. How has it possibly been 3 years already? One thing that we have learned through this process – and it is a process – is that even after losing Connor, we are very lucky. We have two healthy, wonderful boys who keep us motivated every day. We have great friends and family who support us in every way imaginable. They say that “Time Heals All Wounds,” but for the past 3 years, we have thought, that’s crap, nothing can heal this wound. While we believe that we are partially correct, we also know that it is easier to deal with the loss as time passes, so time IS helping. Someday, it may no longer be a gaping wound, but a wound this big creates a permanent scar. While the scar may not be visible to all, it will always be there. There are still days where we are both overwhelmed with emotion from the loss. It sneaks up on you and no matter how good things are, it is like being run over by a freight train. That said, there are many more good days than bad ones.

We have learned a lot about ourselves over the past 3 years. It has given us a perspective on life that not a lot of people have. It reminds us every day to focus on what is important and reminds us to think of others, not just ourselves. While we pine for the days of our naivety about life and how it “could never happen to us,” we know that we are better people for having these scars. Even knowing that, we would trade it in a moment to have just a few more hours with Connor.

Through Connor, we’ve met so many amazing people who are all fighting the fight to help and to cure cancer. Connor Cures is determined to help find a cure, but so are many other great foundations like Journey for a Cure; Stillbrave; Smashing Walnuts; Pile of Smile, etc., the list goes on and on. To honor Connor, we will be hosting our next Connor Cures Gala at the Mayflower Hotel in Washington, DC on Saturday, April 9th, 2016. More details can be found at http://www.connorcures.org/2016-gala-details/. We are looking for sponsors for the event and volunteers to collect amazing auction items. Please contact us if you have time and interest. We are also appreciative of any donation you can make to continue Helping Connor Cure Cancer! http://www.connorcures.org/donate

Thank you for all of your support!

http://www.connorcures.org/three-years

10/25/2015

Thanks to the Mite Beach Bash for all of their support Helping Connor Cure Cancer! Good luck to all of the teams today in their Championship Games!

Connor Cures's cover photo
09/24/2015

Connor Cures's cover photo

The White House needs to go gold this month as the beginning of the path to recognizing that 4% is just not enough and a...
09/24/2015
Rally for childhood cancer awareness cut short in DC

The White House needs to go gold this month as the beginning of the path to recognizing that 4% is just not enough and as an apology for ignoring the facts. How many children need to die for it to matters to everyone? Globally, almost 100,000 children die from Pediatric Cancer every year!

Thanks to Journey 4 A Cure for sharing Connor's picture as part of the efforts to raise awareness (upper left). Connor Cures!

A group of cancer-stricken children and their families were ejected from a park near the White House last weekend, ending the group’s plans for a candlelight vigil to raise awareness of childhood cancer. It was part of a two-day event called Cu

Just three short years ago today, we welcomed Connor Robert White into the world, our third boy.  Just six months later,...
07/06/2015

Just three short years ago today, we welcomed Connor Robert White into the world, our third boy. Just six months later, a very rare brain tumor, an atypical teratoid rhabdoid tumor (ATRT) took him from us way too soon. In the last two and half years since he passed, he has inspired us to help. In his honor, Connor Cures was formed and has so far raised over $200,000 to help support pediatric cancer research.

One of our foundation’s sponsors, Epizyme, is working on a Phase 1 trial of a drug called Tazemetostat (EPZ-6438). Epizyme has received some positive news that the drug will be given the Investigation New Drug (IND) approval from the FDA here in the US and they are awaiting the final approval. We have committed $100,000 to support the doctors and investigators, who are doing some of the associated biology studies related to the drug and the patients being treated on this trial. The investigators take blood and tumor samples from the patients on the study and send them to various labs around the country/world in relation to the cancers of the patients. This is critical to really understand the impact of the drug on these cancers.

http://www.epizyme.com/wp-content/uploads/2015/06/EPZM_News_2015_6_20_General_Releases.pdf

Without your support, we could not have done so much in such a short period of time. Please consider making a donation (http://www.connorcures.org/donate) in honor of Connor on his birthday or anyone else who has been impacted by pediatric cancer. Funds will continue to support these kinds of trials and specifically pediatric cancer research.

Thank you for Helping Connor Cure Cancer!

Please continue to share Connor's story and ask all of your friends to like us on Facebook.

http://www.connorcures.org/happy-birthday-connor/
http://www.epizyme.com
http://www.connorcures.org

Happy Father's Day to all the great fathers out there.  Many of them are currently missing one of their greatest joys in...
06/21/2015

Happy Father's Day to all the great fathers out there. Many of them are currently missing one of their greatest joys in life like this little one due to pediatric cancer. Please continue to Help Connor Cure Cancer (http://www.connorcures.org/donate)

We would like to thank the Machine Aquatics family for all of their support since Connor passed.  In addition to being a...
05/27/2015

We would like to thank the Machine Aquatics family for all of their support since Connor passed. In addition to being a sponsor at our last two Gala's, they have started an annual swim for kids cancer fundraiser. This year, the swim-a-thon raised $18,500 in addition to the $5,000 Gala Sponsorship for a total donation of $23,500 to Help Connor Cure Cancer. A special thanks to Paris and Dan Jacobs for all of their support, both financially and emotionally.

http://www.machineaquatics.com
http://www.machineswimschool.com
https://www.facebook.com/pages/Machine-Aquatics-LLC/125252740875289?fref=ts
https://www.facebook.com/pages/Machine-Swim-School-SwimLabs/223440231026518?fref=ts
http://www.connorcures.org/machine/

Thanks to the Mite Beach Bash for supporting pediatric cancer research!  Kids helping kids!
03/29/2015

Thanks to the Mite Beach Bash for supporting pediatric cancer research! Kids helping kids!

Thanks again for all who donated and congrats to the winners!!

2 Years - Something is Still MissingWe are constantly asked – and especially today – how are we doing?http://www.connorc...
01/07/2015

2 Years - Something is Still Missing

We are constantly asked – and especially today – how are we doing?

http://www.connorcures.org/2-years/

Please share this post and ask your friends to like us on Facebook.

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11654 Plaza America Dr, # 935
Reston, VA
20190

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Comments

Love you all and so very sorry. Thinking of you both today.