John Cooney’s Medical Expenses & Memorial Costs

This Go Fund Me page has been created to help lighten the load for the Cooney family as they focus on helping their 9-year-old son, John, who was diagnosed in May 2018 with an inoperable bithalamic brain tumor. The tumor is so embedded that trying to remove it would result in brain damage.  

We would like to help Elizabeth and Padraig by making financial contributions toward John's out-of-pocket medical expenses. Elizabeth had to resign from her full-time job in November 2018 to focus on getting John the care he needs and has only recently been able to resume full time work again. Although they have good insurance, they have a significant number of medical bills due to the copays and out-of-pocket expenses associated with emergency ambulance and helicopter rides, treatments, medications, and an increasing number of hospital bills.

Please consider making a monetary donation to help them navigate this journey with their family.  Any contribution will reduce their financial burden so that they can more effectively focus on getting John the services he needs and also tend to nurturing their daughters, Rebecca and Naomi, in the midst of all of this.

More details about John's diagnosis, course of treatment, and other information regarding his medical situation can be read at caringbridge.org. Just enter "John Cooney" and you will then be prompted to add your name, email, and create a password. Once you do, you will have full access to the articulate and inspiring updates Elizabeth has written. 

If you are visiting this page but don't know the family personally, Elizabeth Imende Cooney is one of my dearest friends. We met in Hannover, Germany where we worked together at the international school for the 2002-03 school year. She and I became fast friends and have been dear friends ever since. I was a bridesmaid in her wedding in Kenya in 2007, and my daughter, Elizabeth (Ellie), is named after her. Elizabeth is married to Padraig and together they have 3 kids: Rebecca (12), John (9), and Naomi (5). She lives in California and I’m in Oregon, and since I can’t do much to help Elizabeth in person, I organized this GoFundMe campaign to help support her and the Cooney family from afar. 

*For those of you who would like to know more about John's health journey, here are a few details extracted from Elizabeth’s Dec 13, 2018 journal entry from caringbridge.org.

-At 6 months old, John was diagnosed with a benign, fluid-filled arachnoid cyst in his brain. He had neurosurgery at 6 months old to address that and gratefully it was an effective surgery performed by one of Boston's top neurosurgeons. The cyst was fenestrated (pierced) in two places so that it could drain with the rest of the cerebrospinal fluid and as long as it drained and filled at the same rate there would be no build up of water in the brain. We were advised to have routine MRIs once a year to ensure things were still flowing with no blockage which we did, and they were. 

-At 7 years old, on May 18th, 2018, during a routine annual MRI, John’s medical team discovered a new, large gray mass in his brain. John was diagnosed with an inoperable bithalamic brain tumor. (It is so embedded that trying to remove it would result in brain damage.)

-John then underwent neurosurgery and the biopsy confirmed that it was benign, a "low grade astrocytoma".

-John began receiving low-grade chemotherapy in hopes of shrinking the tumor. This chemotherapy was very low toxicity and proved to be minimally disruptive to John's daily life. He was still able to attend school, he didn’t lose his hair, and he did not feel sick due to the chemo.

-John's first treatment cycle was 10 weeks but after about 7 weeks, John had a massive seizure. He was rushed by ambulance to a nearby hospital and then airlifted by helicopter to Charles Mass General Hospital in Boston. It was difficult to get him to stop seizing and he had to be intubated. John had another seizure shortly after that one.

-To prevent seizures of that magnitude, John is on daily high doses of two anti-seizure medicines, Keppra & Onfi. These medicines have a sedative effect so he is definitely a drowsier version of himself.

-The first 10-week cycle of chemotherapy did not have any impact on the tumor. Therefore, John received a second kind of chemo for the subsequent 10-week cycle. An MRI in December 2018 revealed that the tumor had grown by about 25% since beginning the second cycle of treatment. The tumor was now blocking the cerebrospinal fluid pathways so that there was fluid build up and swelling in his brain, known as "hydrocephalus" and was causing John to experience incontinence.

-On December 20, 2018, John had surgery to install a shunt (a long tube) to drain the fluid building up from the brain into John's stomach and to get another biopsy of the tumor. Since then, John has had to undergo multiple surgeries for shunt revisions.

-John received proton therapy in spring 2019 in an effort to target the tumor. This proved to be successful, in that the tumor has changed shape and has been broken down. However, it's still pushing on other parts of the brain, affecting his functionality, so John is receiving services to learn to walk and talk again.

-For all our praying friends: Please pray for a continued report of no malignancy. Pray for a miracle…that God would do what the doctors cannot with this "inoperable tumor".

Donations

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  • Amanuel Mengistu 
    • $50 
    • 4 d
  • Michael Ashburn 
    • $200 
    • 12 d
  • Mara and Daniel Coelho 
    • $1,000 (Offline)
    • 25 d
  • Lori Doty 
    • $1,000 (Offline)
    • 1 mo
  • Mara Lopez 
    • $50 (Offline)
    • 1 mo
See all

Organizer

Alexandria Fichera 
Organizer
Andover, MA
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