Help Eddie recover from multiple brain surgeries

My name is Erin Harvey. Eddie's (they/them) aunt and Amber Harvey's sister. It pains me to write this as I’ve never felt the need to ask for outside help, this is an exception as the situation is so unforgiving and painful. We would appreciate any financial support to help Eddie recover from 20+ brain surgeries. I have included a summary below, you can read Eddie’s entire story here with my summary and my sister Amber’s (Eddie’s mom) complete journey since Eddie was diagnosed of a JPA brain tumor in 2019. I appreciate you reading Eddie’s journey and helping in this awful situation.

 

My sister Amber made the hard decision to go on FMLA, unpaid leave, while still responsible for insurance costs starting this Monday, January 24th, for an indefinite period of time. Amber made the decision to move Eddie to Lurie Children's Hospital on Nov 22nd, 2021 (Eddie’s birthday) for a second opinion after a long 2 year battle to get well. In November 2019 a 5 cm JPA tumor was found in Eddie’s cerebellum. Since being removed Eddie has struggled with fluid on their brain (hydrocephalus) causing fevers, nausea and intense fatigue. They were removed from school starting March 2021 due to these side effects. Since Eddie's admission to Luries, they have had 6 surgeries (on top of ~20 throughout 2019, 2020, and 2021) with no end in sight. Eddie’s condition is so rare a leading children's hospital, even in Chicago, only sees 1-2 cases a year. Eddie has been left unable to see, talk, eat, or walk, or do anything a normal 16 year old could do - something as simple as scrolling Instagram or TikTok.

 

It breaks my heart. I’ve looked into multiple foundations to provide financial pediatric assistance - but since Eddie’s condition is so rare few are able to help cover medical costs, as they are condition specific. With astronomical medical bills, monthly family insurance payment to keep Eddie alive, and a large deductible reset ($10K+) now that we are in 2022. I will do anything I can to help Eddie and my sister stay financially secure during this time as Amber has a home in Hudson (near Bloomington, IL) and two other children back home to support. Unfortunately, outside of her mother, my husband (Amber's BIL), and me she does not have any financial backing. We would really appreciate any help you can provide. Thank you so much and keep Eddie in your thoughts to get better + home to her beloved pug Titan + being a full time high school student!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Amber's in-depth journal on Eddie's journey.

 

Hi,

 

I'm Amber, Eddie's mom. It’s hard for me to write this as I have to relive it and it has been torture to see my baby go through this. Eddie is so strong, but the last year has taken a huge toll on them.

 

For anyone that doesn’t know Eddie’s history, a JPA brain tumor was found in their cerebellum in November 2019, right before turning 14. The tumor was big, 5cm diameter, but it was benign and fully resected which we were and are so thankful for. Unfortunately, the location and size of the tumor caused a complication of hydrocephalus- a condition where the cerebral spinal fluid doesn’t drain properly and it backs up causing pressure in the brain. Eddie had a shunt placed in December 2019. They seemed to improve somewhat after that, but suffered from chronic fatigue, fevers and occasional nausea from a pocket of fluid that never resolved.

 

In March 2021, they were asked to leave their high school and friends as they were unable to perform as well as they were before the surgeries. They were supposed to start attending a new school that month, but the complications from the fluid leak started becoming more difficult to deal with, so the surgeon completed a surgery to patch the leak. From March 2021-September 2021, Eddie had eight surgeries to try and correct the leak and one surgery to drain an arachnoid cyst they ended up getting in the spine from all of the surgeries. The arachnoid cyst presented as excruciating pain on a flight to Florida where we planned to go to celebrate Eddie’s recovery. Eddie wasn’t able to go to Universal Studios as planned as we were in the emergency room instead. All of the surgeries to correct the leak (patching, shunt adjustments) failed and Eddie continued to get sicker and sicker. The last surgery in September caused frequent nausea and vomiting that became too frequent to be safe for Eddie.

 

In November 2021, we took Eddie to see a new surgeon at Lurie’s Children’s Hospital in Chicago. He recommended if the nausea did not improve, he would take everything out and start over from scratch. The nausea did not improve and Eddie was admitted to the hospital on their 16th birthday, November 22, 2021.

 

Since being admitted, Eddie has had five surgeries and is currently in their sixth surgery right now on January 15, 2022. In the weeks they have been here, they have deteriorated to a point where they cannot walk, talk, eat or drink. Their vision has been affected as well. They have very little strength in their hands so they can’t do things they enjoy like draw or even scroll on TikTok. We have been told Eddie has a rare form of hydrocephalus that is affected by low inter-cranial pressure. It is so rare that even in Chicago they only see 1-2 cases a year, and there are no great treatments for it. It is also complicated by the multiple surgeries Eddie has had and multiple blockages in the fluid drainage areas from scar tissue.

 

Eddie’s surgeon gave us the final option to either do a major surgery to see if he could open up an area and avoid having to place a shunt, or place a new shunt that is supposed to work better with low pressure hydrocephalus. Eddie’s dad and I decided Eddie’s body and brain couldn’t handle another big surgery, so opted to have a new shunt placed. Eddie is currently getting that shunt placed and we are all hoping this is the last step before some kind of recovery.

 

We don’t know how long and involved recovery will be for Eddie. They’ve been in a hospital bed for close to two months and had so many surgeries on their brain that have caused so many complications. Their dad took paid leave for the last several weeks but his is running out. I am going to begin a leave at the end of this month, but I used almost all of my paid leave last year for the other nine surgeries so this will be an unpaid leave. I’m not sure how long I will be on leave, but I’m determined to help Eddie recover. We will be in a long term rehab facility after hospitalization, but we don’t know how long before they can go there.

 

We have quite a collection of medical bills of course, a pricey ambulance ride to Chicago from Bloomington, and I will be losing my income at the end of January which pays for Eddie’s medical insurance. While on leave I will still have to pay my share of insurance premiums as well.

 

Eddie has also missed about two years of school, and all they want is to be able to go to school like a normal teen. My hope is after this recovery we will get them there. The new school they were supposed to go to (that they still have yet to be able to attend) has been phenomenally supportive and kind. We can’t wait until Eddie can actually be a student again. Most importantly, we need to get Eddie home to their pug, Titan!

 

Thank you to all of you who took the time to read Eddie’s story. Anything provided to help us get through this difficult time is so appreciated. Whether financial, prayers, thoughts, words of encouragement for Eddie - everything and everyone pulling behind Eddie to recover we can’t thank you all enough.

 

Much love,

Amber