John Francis "The Captain" Fights Brain Cancer

$13,670 of $30,000 goal

Raised by 248 people in 1 month
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.

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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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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John is out of surgery! I don’t know details except that the surgeons were able to get as much as they could without touching the brain stem. The procedure took approximately 9 hours and the recovery will be tough, but he’s already moving his arms and legs.

We couldn’t be more overjoyed for answered prayers! Thank you for praying with us and supporting us! Praise God for this miracle!

I’ll update more when I know more!
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First and foremost, if you are reading this, please take a minute to pray. John is undergoing a brain surgery TODAY in hopes of removing some of the tumors. The large one on his brain stem is still inoperable, but the other “splatter-painted” tumors have grown to a size where surgeons are hopeful that they can get to them.

Lord, I pray You are with John and his surgeons this morning. Bring John peace and strength; give the surgeons steady hands and clear thoughts as they fight for John’s life. Ease our anxiety and bring us calm as we wait for word. Please act in accordance with Your will today and all days, Lord. We thank You for all the blessings You have given us, for every day with John has been an amazing gift. Thank You for all the people You have brought to our lives during this trial for we know that every encounter only serves to further glorify You, Lord. Please let Your mercy and grace and healing be poured out onto John today. In Jesus’ name, we pray, Amen.

Yesterday, John was honored and humbled to be surrounded by family and friends as he was made an honorary Captain in the Washington County Sheriff’s Office. What started out as an idea from John’s 5th grade teacher for him to do a ride along and see the K-9 team kennels, the sheriff’s department took it to a whole new level.

Here is just some coverage of the event with tons of amazing photos and video:


If you are in the greater Whitehall area, please consider stopping by the Whitehall Elks Lodge TONIGHT for a spaghetti dinner benefit. The event starts at 4pm and take-out orders are available. 5 Elks Way, Whitehall, N.Y.

Photo Credit: Glens Falls Post Star/Don Lehman
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Our family expected radiation and chemotherapy to start this week. John and Carrie spent last Friday at Albany Medical Center getting fitted for his radiation mask (so only the tumors are targeted during treatment) and undergoing one final MRI to ensure the location of those tumors.

Carrie called for the MRI results on Monday and we received surprising news: The tumors had grown since the biopsy on May 7. The doctors weren’t kidding when they told us this was a complicated case with an aggressive and fast-growing cancer.

As the reality of “being a cancer patient” has set in, so has the financial burden. None of us could have imagined how much all of this would cost. We knew it would be expensive and we set our original goal for this campaign at $10,000. When that was reached we were overwhelmed by the blessing.

But as we did the math for co-pays on specialty doctor visits, physical therapy, radiation treatment and lab work, we were shocked at the real cost. Before medication (which includes steroids, nausea medication, pain medication and oral chemotherapy), Carrie’s out-of-pocket expenses will be an estimated $4,400 for an eight-week round of treatment. We believe chemotherapy drugs will be an additional (approximate) $4,000 for this first round of treatment.

All the while, Carrie is unable to work a full schedule to cover normal living expenses.

We don’t want to sound greedy or ungrateful, because what this community has done for us is astounding. We can never say “thank you” enough for the outpouring of kindness and love and support that we have experienced in less than a month.

But we need to ask for more. More prayers. More shares. More donations.

The road we are on will be the longest and toughest of our lives. While John fights for his life, we’re fighting for John – the little man who would drop everything for someone else. The little man who is so compassionate and sweet that, despite his sickness, still reminds his younger cousins to be polite and kind to one another. He still shines joy and humor into the lives he touches. He doesn’t even know how strong he is or how inspirational he has been. This little man has more gumption and determination and strength than any of us imagined.

We will never stop fighting for him or for other children and families going through such an unthinkable ordeal. We pledge that any donation made that we do not directly use for John’s care will be paid forward. We promise to fight alongside others who cannot fight this disease and diagnosis themselves.

For now, we pray for all of you who have shared our story and donated. We pray for those that have prayed for us. We pray for healing and comfort and peace. We know our God can do anything and with faith and trust, we will one day know no pain, no disease and no suffering. We thank God for the opportunity to get to know you and for you to get to know us. May God bless you and keep you. Amen.

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” - ‎Philippians 4:6
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$13,670 of $30,000 goal

Raised by 248 people in 1 month
Created May 14, 2019
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