Lindsey's Life

Hi. I'm Jason and this is my five-year-old sister Lindsey. Here we are watching cartoons together.


If you can spare a little time, I'd like to tell you a bit about us.
Lindsey was born June 1, 2007"”two months premature. Just before her birth, doctors weren't sure if she or mom were going to live through it.

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She spent five or six weeks in the hospital before she came home.

Over the next three years, she grew into the sweetest little girl ever:

Here she is on her birthday:

On Wednesday, July 7, 2010, just over a month after she turned three, Lindsey fell from our parents' bed and hit her head on the floor. With her being the seventh child, this was hardly the first time one of us had fallen, but this time was different. Her cries indicated there was something very wrong, and within a half hour she had thrown up three times. Mom took her to the doctor to find out if she had a concussion. She didn't, so she was taken to Henry County Hospital for a CT scan, which revealed a mass in the right ventricle of her brain and an abnormal amount of fluid. She was then taken by ambulance to Riley Hospital for Children in Indianapolis. She experienced two convulsive episodes in the ER that convinced the neurosurgeon to get her into the O.R. immediately to relieve the fluid pressure and since she was out anyway, to get a biopsy of the tumor. They put in an External Ventricular Drain (EVD) to drain the excess fluid from her brain.
After this first surgery, Lindsey went to the PICU North on the 4th floor at Riley. She remained intubated on a ventilator and sedated until Thursday evening after an MRI. The breathing tube was removed and she was started on clear liquids.

My older brother and his fiancée moved in soon after Lindsey was admitted to the hospital so there would be someone around to take care of the other kids while dad and I were at work and mom was at the hospital with Lindsey. This brought us to a total of ten people living in one house...with only one bathroom.
In addition to the tumor in her brain, they also found three small ones at the base of her spine, suggesting the presence of cancerous cells throughout her cerebrospinal fluid.

On Saturday, July 10, Lindsey went back to the O.R. to remove as much as possible of the brain tumor and the EVD moved farther up her head. Her surgery was expected to last 12 hours, but they called to say they were starting to close just after 2 hours into it. Fortunately the nurse followed that up by saying the surgery went really well and Lindsey was doing super.

This was taken July 11th.

The surgery caused her to lose the use of the entire left side of her body, and through physical therapy she is able to regain some use of it, but will never recover full use of her left side. In addition to giving her problems walking around or picking objects up with her left hand, the left side of her mouth doesn't work properly either, making it more difficult to understand what she says.

She had another MRI on Monday, July 12 about 3 in the afternoon after she'd been basically awake (and very agitated) since noon the previous day.

On Tuesday, July 13, Lindsey was moved out of PICU to the Heart Center to continue healing.

On Thursday, July 15, Lindsey again was taken to the O.R. to have the EVD removed and a permanent shunt put in. The shunt comes out the back, lower left of her skull and runs under her skin, down her neck, across her shoulder to the front and then down the chest to the upper right abdomen where it goes through the muscle in order to drain the brain fluid into the fluid surrounding the organs in her belly.

Riley, with assistance from two other hospitals, analyzed the tumor they had removed, but hadn't encountered one quite like it before, so they were unsure what would be effective. At the beginning their best chance scenario was that there would be enough brain damage she would never mentally progress beyond her three-year-old state, and their most likely scenario was that she would die. They decided they would give her six weeks of radiation treatments and six months of chemotherapy as the best chance of killing the cancer still in her brain and spine.

On August 17th, Mom and Lindsey moved into the Ronald McDonald House in Indianapolis so she would be close to the hospital. Her radiation treatments started August 19th. The radiation was focused on the spot in her brain and her entire spinal column, due to the possibility of more cancerous cells in her cerebrospinal fluid. Five days a week they had to use the maximum safe dosage"”if "safe" can really apply here"”so it will cause curvature of the spine as she grows.


This is August 24, 2010, when Lindsey had her second chemo treatment and fourth radiation treatment.

It wasn't until October 5th when they were able to move back home.

Lindsey's Physical and Occupational Therapy started September 21, 2011, and shortly after we took a vacation to Orlando, FL, paid for by the Indiana Children's Wish Fund"”Not to be confused with the Make-A-Wish Foundation. One day we spent at Walt Disney World:

That was great. Lindsey really enjoyed her time there...

...Especially meeting Tigger.

In December 2011, she had started to lose some of her hearing, and also needed to get glasses; both side effects of the cancer treatment.

Despite the fact that Lindsey is in remission, related medical problems keep popping up. The radiation damaged her pituitary gland so her thyroid and adrenal glands don't produce enough. She started taking levothyroxine for her thyroid on March 23, 2012, and hydrocortisone to treat her adrenal insufficiency on April 20, 2012. The thyroid hormone deficiency is bad enough, but with adrenal insufficiency an illness or injury could cause her to slip into a coma and die, and she is especially susceptible to illnesses now, so we have to keep a close eye on her. One of the side effects of the hydrocortisone is hunger and weight gain, so you may notice she's a bit pudgy.

In July 2012 she got braces for her feet (which you can see in the first picture) to keep her ankles from rolling in.

In August 2012 we discovered a buildup in her ear which appears to be a kind of dry, rubbery earwax. Doctors don't know how to prevent it, so at the moment the only treatment is to remove it when it starts to accumulate too much.

Also in August we were told about a dark area which appears on the MRI scans of her brain. It appears to be brain tissue, but they don't know what is altering it to cause it to appear differently on the MRI. The area is growing, but at a decreased rate as of her January MRI.

In September 2012 we found out that she had cataracts"”another side effect of the radiation and chemotherapy. Surgery was performed to remove the one in her right eye on April 16th.

The surgery for her left eye is scheduled for May 28th.

Some days she is easily confused and has difficulty remembering things that happened even just a few minutes earlier.

She tends to take a 2-3 hour nap each day. Here's one from a few days ago where she's holding a present from one of my co-workers.

As if all this wasn't enough, doctors say her learning curve will end sooner than most people's, but we don't know how early. Also, this form of cancer has a very high recurrence rate, and even if this cancer doesn't come back, they say she will have another form within fifteen years due to the radiation she was subjected to.

On a brighter note, a few months ago I also started giving Lindsey a small My Little Pony figure every week. Here she is with the most recent one.
(You may not be able to tell very easily, but she's smiling)

Each time she gets a new pony she introduces the new one to all the others she has. It helps a lot with her memory and fine motor skills, in addition to the fact that she just loves playing with them.

Yeah, it's 20 minutes long. Start at the beginning to see her naming all of them she can, [10:26] to start setting up for [15:27] BBBFF, with minor interruptions for getting a drink. She's got a little bit of a cold, and doesn't quite have the hang of clearing her throat yet. [21:25] for her Big Mac impersonation.
Her next MRI is June 24th. As you can imagine, these are always stressful, waiting to find out what they've seen, and whether or not the cancer is back yet.

To everyone who reads this, I hope the smile on Lindsey's face, despite all she's going through, brings a smile to yours as well.

Unfortunately, there are some things a positive attitude can't fix. Debt is one of those things. Just to give you an idea of the costs involved here, the first nine days in the hospital"”just for the room itself"”was $4,001.50/day. The operating room"”again, just the room"”was $60,503.50. Within a month medical costs had reached half a million dollars. Fortunately, after the first week, Children's Special Health Care Services took over covering costs that our medical insurance wouldn't cover. Unfortunately, the first week wiped out everything my parents had saved and maxed out their credit cards, and they've been living on the brink of bankruptcy ever since. Without more money it is only a matter of time before we are unable to make minimum payments anymore.However, if we earn any more, we are ineligible for assistance from Children's Special Health Care Services. Lindsey's weekly therapies, her braces, and all manner of other medical expenses would fall on us to pay them. We would not be able to. On the other hand, if we earn any less to avoid hitting that limit, we won't be able to pay all our bills and will lose our home of over twenty years.

My brother and his wife can't move out, because while that would lower the household income, it would also lower the cap because there would be two fewer people in the household. We would exceed the income cap and lose Lindsey's medical coverage.

If I were able to move out, that would decrease the household income by enough to make a difference, but I can barely afford my student loan payments as it is. If I had to pay rent somewhere the student loans would fall back on my cosigner"”my dad. Unable to make the payments, we would lose our home.

Even if nothing goes wrong between now and then (which they will), when Lindsey turns 21 she will no longer receive coverage from Children's Special Health Care Services. All those extra bills will suddenly fall on us. Remember that by this point they expect she will have some form of cancer again.

As my mom phrased it, we are in a dark tunnel, and there's no light at the end. Without external assistance, we cannot get out of debt. If you can help, even if you can only give a few dollars, please do. Anything would help and we would greatly appreciate it. The best way to contribute is to use PayPal to send money to [email redacted] because there is no fee to "send money to family or friends" whereas this site does take a small fee from each donation. Your name, donation, and message will still appear here unless you ask me not to mention you. Then I'll just add the dollar amount from "anonymous" so we can more easily keep track of how much has been given. If you can't use PayPal, please use the donation button on this page.

I have to include this for legal purposes: Any contributions are not tax deductible.

Thank you for reading. If you want to get regular updates on Lindsey's status, or see her story from my parents' perspective, visit http://www.caringbridge.org/visit/lindseystegner (A free account is required.) I will also continue to post updates with her status here.

The total goal listed here is approximately how much debt we as a family have as of 5/11/2013. The debt will increase as time goes on simply due to interest accruing faster than we can pay it off. This number also does not take into account any future medical bills.

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Jason Stegner 
Organizer
Mooreland, IN
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