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John Francis "The Captain" Fights Brain Cancer

$20,232 of $30,000 goal

Raised by 401 people in 3 months
Created May 14, 2019
On May 14, 2019, after two months of hospital stays and questions, John Francis "The Captain" was diagnosed with a Grade 3 Glioma tumor on his brain stem. That's brain cancer. The aggressive and fast-growing kind.

As you might expect his mother, Carrie, has been by his side the entire time. She has been out of work and has been staying at Albany Medical Center with John. John's Mema and Papa are driving down to visit every single day. His father, Lucas, visits every chance he gets. While medical insurance is covering treatment, the costs associated with the stay, travel and being out of work are climbing.

The funds will allow Carrie to stay by John's side during treatment and cover her travel, food, mortgage, car payment and other expenses.

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Back story:

John's medical symptoms began earlier in the year when he had trouble walking, talking and eating. The issues progressed and he began to have 45-minute long episodes of what could only be described as seizures. He was admitted to the hospital in March 2019 and underwent a series of MRIs and CAT scans to assess the problem.

The initial scan showed inflammation in the cerebellum (the center of the brain that controls all mobility) and doctors prescribed high-dose steroids to get the symptoms under control. A round of plasmapheresis was scheduled in April to combat what doctors thought were out of control antibodies.

Before Easter, the steroids stopped working and his condition deteriorated. He was readmitted to the hospital for another series of tests. An additional MRI revealed that it was not inflammation but a mass in his cerebellum. A follow-up MRI with contrast showed that there were several masses in different areas of his cerebellum. John was discharged from the hospital and the biopsy was scheduled for 10 days later. 

Symptoms quickly worsened and Carrie rushed John back to the hospital and was immediately admitted to the Pediatric ICU and the biopsy was moved up by several days.

John underwent an 8.5-hour long procedure on May 7, 2019. The largest mass was too close to the brain stem and surgeons were not be able to remove it.  The smaller masses were unreachable during the biopsy.

After a week of pain control with several different medications (some of which caused allergic reactions), we were told what no family wants to hear: the tumor was cancer. A radiation and chemotherapy treatment plan is being set up and his cancer treatment will likely begin within 30 days.

Carrie has fewer than 10 hours of leave because she broke her ankle last spring and spent the entire summer without being able to stand on it. It healed incorrectly and was out of work again following surgery over Christmas.

**This fundraising effort is organized by his Aunt Sarah, Carrie's younger sister**
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HOME & HAPPY

John and Carrie came home to an amazing welcome nine days ago. They were honored to have a police escort for the entire 90-mile trip from Albany Medical Center to their door in Whitehall. As they exited each jurisdiction, a new set of police, EMS and firefighters joined the procession.

The first two days home were very rough. John was unresponsive and having difficulty breathing on Friday. The hospice workers advised Carrie and Lucas to call family and begin planning for the next phase.

But, God is good!

The entire community of Whitehall and Capital Region came together on Friday evening and lifted our family in prayer during a vigil in the field outside of John's house. While we waited for the worst, God worked a miracle.

On Saturday morning, John woke up and asked for waffles and bacon. He was talkative and energetic and HAPPY. He joked and laughed and was surrounded by all those that love him so much that it hurts.

Since Saturday, things have settled down and John and Carrie are receiving visitors as they are able. They have even gotten John out of the house and gone for a walk to get the mail at the end of the driveway. His spirits are high and we are cherishing every single day we have with him. He's beginning to feed himself and remains as optimistic and sarcastic as ever.

We praise God and all of your prayers for this miracle!

"For nothing will be impossible with God." - Luke 1:37 (ESV)

Story coverage of prayer vigil: https://cbs6albany.com/news/local/whitehall-rallies-around-young-boy-battling-brain-cancer?fbclid=IwAR2-2N4HOqGgPtQE3QXICF4uwMi5kQikW4rfX0UPXTL7Ar9ElSZLy8lwi1U

Story coverage of escort home:
https://poststar.com/blogs/don_lehman/blog-the-captain-returns-home-with-a-special-escort/article_8c07b4f5-4318-54a0-99ca-204fdcf4af83.html
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There’s no easy way to say this: John’s tumors are not responding to treatment. And there is no healing him.

John was having difficulty breathing Thursday night. Doctors ordered a CT scan to check the tumors and determine if they were impacting his breathing. The CT showed that the tumors are not responding to the radiation and chemotherapy. The tumors are, in fact, growing. John’s medical team cannot believe how aggressive the tumors are and believe that further radiation will only increase inflammation and pain. The growing tumors are now impacting other parts of his body and doctors suggest that it is time to focus on comfort care.

We’re all devastated and heartbroken.

Carrie, Lucas and John are deciding as a family what the next steps will be. The options are: Continue or stop treatment; remain in the hospital with medical support; hospice at home. They will meet with doctors and hospice social workers today to discuss all the details and set a new plan in motion.

Please pray for a miracle and for guidance and peace while they make this decision.
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TREATMENT UPDATE

The last two weeks have been anything but easy.

John was discharged from the hospital in time to celebrate his 11th birthday at home with his friends and family. Carrie was even able to pull off her annual balloon avalanche like on birthdays past.

The joy of being home was short lived and increased pain forced Carrie and John back to the hospital the day of his 5th Grade Graduation. He arrived at graduation and was prepared to walk with his classmates, but the pain was too much and they had to leave before the ceremony started.

An updated MRI showed that the tumors are growing rapidly and had gotten dangerously large since his second surgery on June 11. As of today, he is undergoing daily radiation and chemotherapy in hopes of stopping the tumors growth.

He has had several highlights this past week while staying at Albany Medical Center.

There is a daily visit from the K-9 unit to John’s bedside. Most commonly, it is a German Shepherd named Tex and his handler that come and escort John and Carrie to and from radiation treatment. Tex senses John’s love for him and he climbs into the hospital bed to provide some cuddles and relief.

Other members of several law enforcement agencies also stop by regularly to bring sweet treats from Stewart’s and to chat. These visits are wonderful breaks from the monotonous life in a hospital bed.

The 109th Airlift Wing of the New York Air National Guard even stopped by to (as John explained it) ensure that he will outrank not only his father as a Captain but his uncle as well. They made him an honorary Major and presented him with a flight suit and coin so he’ll win all the coin challenges in his future.

A friend of the hospital also pulled off the biggest surprise yet: A personal video message from Rob Gronkowski, former NFL New England Patriot player. “The Gronk” is John’s favorite player and having a personal message of strength and recovery was just the kind of medicine John’s heart needed to hear.

The next day, after almost a week of being unable to move his right arm and leg, John was able to move them both! Praise God for this small miracle!

Carrie and John will be at the hospital until further notice to receive round-the-clock pain medication and daily radiation and chemotherapy.

The support of the entire Whitehall community is something we cherish – it may be a small town, but it’s a town that supports its own when the time arises. Thank you all for your continued prayers and support. The staff at Albany Medical Center (even those no longer assigned to John’s case) are making them feel at home in a very stressful and trying time. They have gone above and beyond in their care for John and Carrie and will always hold a special place in our hearts.

As always, please keep John, Carrie and our entire family in your prayers. We are overwhelmed by the support and generosity that God has blessed us with. We appreciate you more than you know!

Lord, with You nothing is impossible. You are God of all flesh; we love You and we are confident that no situation is too hard for You. We come to You on behalf of John seeking complete healing from cancer. Jesus Christ has fully paid the price by the stripes He took; we are asking that You vanquish this disease and cast it out of John once and for all. In Jesus’ Mighty Name, we pray, Amen.
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POST SURGERY UPDATE

It’s been a very long week for John and Carrie. In the days immediately following surgery, John was feeling good and moving from the bed to the recliner regularly. The movement wasn’t easy for him but he was determined to do it and get his strength back. He has been focused on attending his 5th Grade Graduation/Moving Up Ceremony on June 25 and he knows he has to sit on his own in order to do that.

He's also preoccupied with planning the details of his 11th birthday on June 22 - a small gathering of family and friends over a fire with s'mores in the backyard of their home.

A few days after the surgery, he started to experience horrible migraines and increased pressure at the base of his neck. He had to have CT scans done to determine if there was built-up fluid or if those symptoms were related to the still intact tumors.

John will start oral chemotherapy tomorrow – one week out from his second surgery – and doctors hope his incision will heal enough for them to begin radiation next week. He was measured for his radiation mask today and it was very difficult for him to lay flat on the table.

All the while the staff and nurses at Albany Medical Center have been phenomenal. One volunteer at the Ronald McDonald House went above and beyond and introduced John to a Roald Dahl book that he hadn’t read before.

A dear family friend also showed up with the surprise of a lifetime for John: a 2007 World Series Ring that he received while on a special tour at a Boston Red Sox game. And because John hasn’t lost his sense of humor, he’s calling the ring “his precious” and is referring to himself as Smigle from “Lord of the Rings." He’s also upgraded the name of his incision scar to Lightning Bolt 2.0.

There has been no discussion on when John and Carrie will be discharged.

Let us pray:

Lord, Your word says You did not give us the spirit of fear but of power, love, and a sound mind. Lord, we cast these thoughts and cares aside and choose to think on Your goodness and mercy. You love us unconditionally. Thank You for being here for your children in our time of need. Lord, bless our family. Strengthen us. Itisn’t easy watching a loved one endure a cancer diagnosis. Renew our minds and encourage us. Reassure us that we are in the palm of Your hand. In your name, we pray, amen.

“Cast all your anxiety on him because he cares for you.” 1 Peter 5:7
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$20,232 of $30,000 goal

Raised by 401 people in 3 months
Created May 14, 2019
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