Kim Steele Recovery Support Fund
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Kim Steele Recovery Support Fund.
Warning: Graphic Incision Photos Below
March 12, 1995 I was blessed with my one and only baby sister. She was the second grandchild and niece, behind me, on both sides of our family so the love for her was abundant from the start! Kim was a sweet, sensitive, curly-q and we were always known as the "giggle sisters" growing up.
Little did anyone know until Kim was about 17 years old, that she had been developing a rare, slow growing brain tumor since she was just an embryo! She was feeling pressure in her head when laughing or straining in some ways so she went to get it checked out with a primary care doctor. The pressure sensation and hearing issues she was feeling were written off to be caused by dehydration or possibly high sugar levels. After none of the initial remedies subsided the pressure or other symptoms, Kim kept returning until she was finally sent for a MRI. Once the MRI showed something of concern, she was referred to see a neurosurgeon to discuss. A neurosurgeon close to home and a separate family-recommended neurosurgeon were both uncomfortable with working with Kim's case.
This tumor, known as an Epidermoid brain cyst, is usually benign and "develops when cells that are meant to become skin, hair, and nails (epithelial cells) are trapped among the cells that form the brain." Kim's mass was discovered to be wrapped around 9 out of 12 of her cranial nerves and her brain stem. It was in a rough spot and was rather large. It had been growing for 18 years! We were finally recommended to see Dr. Sen at NYU Langone in New York City who was willing to discuss a surgery option to remove Kim's tumor. Being over an hour from our home in New Jersey, the transportation and hotel stay expenses began. Whether it was bus, train, or a private car to a nearby hotel - each trip was expensive.
Kim finally underwent an almost 12 hour brain surgery with Dr. Sen and his surgical team in August 2014 at the age of 18. She was a trooper going in and a trooper coming out. We were told by Dr. Sen, after his very long day in surgery, that all of the tumor was removed except for some very small pieces that he was unable to get to at the time. The surgery was successful but there was temporary double vision and muffled hearing due to aggregating the nerves. Kim was told she would possibly need another surgery in another 20 years, if those pieces grew just at it had before.
After this successful surgery, Kim came into some complications which just prolonged her healing and recovery. A few weeks after, her Cerebrospinal Fluid (CSF) was leaking from her incision which had the hospital calling Kim to come back immediately to properly drain it with a spinal tap for 4-5 days. A month after the initial surgery, she was back in the operating room to clean out infection. After that, she was home with a PICC line for 8 weeks for antibiotics. A visiting nurse would come to change her bandages and help with her IVs every day. As a family we even learned how to help out ourselves.
Fast forward to 2020 (one hell of a year), where Kim is due to go for her annual MRI for Dr. Sen to monitor any growth. Well, of course this year brought the bad news that the left over pieces did show growth and it was significant enough to have a second surgery. The mass was sticking to Kim's 7th and 8th cranial nerve, which controls her face and hearing. This was a shock to us all. We thought Kim would be 40 years old if she ever needed to have another! But, the race was on to get it taken care of before Kim was kicked off our parent's health insurance and before I was to be married where Kim would be my Maid of Honor! Dr. Sen was confident he could remove the remaining tumor and be done with this once and for all.
On January 12, 2021 Kim underwent a third brain surgery, for 6 hours, under Dr. Sen and his surgical team. They successfully removed the rest of the remaining mass which breathed a sigh of relief to our entire family. Kim would not have to have this burden on her mind anymore (literally). She was sent home to begin her healing.
A couple of weeks after her third surgery, a large pocket of the CSF was forming right along her incision. It looked like a golf ball at one point. When the fluid did not dissipate on its own, Kim was back at NYU to try a head wrapping and new medication to stop the fluid from building up. She was wrapped so tightly for 4 or 5 days until she could remove it to see if this plan worked. Unfortunately, it did not and the next course of action was to surgically implant a programmable ventriculoarterial brain shunt to drain her CSF to an artery or vein leading to her heart.
Tomorrow, February 18th, Kim will be undergoing her 4th brain surgery at the age of 25. Our hopes and prayers are that this shunt will do its job and can eventually be removed. The dial that is "programmable" will allow her doctors to change the flow of draining over months time to see if the shunt is no longer needed. We are continuing our hopes and prayers along with so many family and friends that have sent their well wishes or are thinking of us all that tomorrow goes as smooth as possible. We hope Kim is coming to the end of this so she can get back to living her life!
I know this is long, and those of you who know me personally know I can get carried away with a keyboard. I decided I wanted to do this for my sister and for my family, who is dealt with unfortunate circumstances in what feels like more often than not in our lives. In the midst of all of this going on, our father James Steele was diagnosed with early-onset Alzheimer's around the same time we learned of Kim’s tumor. We are going on 7 years since his diagnosis at 54 years old. The stresses that our family faces can sometimes be overwhelming but with the support of our friends and family, we're all still trucking along and being strong for our Kimberly. We are a tight-knit crew here and I hope this long message of Kim's trying story is able to give back even a little bit to Kim and my family after this very financially and emotionally draining ordeal.
Kim's health insurance runs out in 3 weeks where she will be forced to purchase her own plan and pay out of pocket for its premium. Depending on her deductible, which will probably be high (I have to purchase my own plan as well), she will have to pay for when she goes to Manhattan for follow-ups or whatever other future health plans are set for her. She is out of work for the time being and receiving a very low short-term disability check every two weeks. Being a dog groomer, a majority of her pay is made from tips. Being out of work has her struggling to make ends meet while she is supposed to be healing.
Please consider making a donation to Kim and her recovery or simply share this page to others. For more information on these rare Epidermoid brain tumors, please see http://epidermoidbraintumorsociety.org.
Thank you all for reading, donating, sharing, and just thinking of Kim and her road to a full recovery. We love you Kimber <3
Peace & Love Always,
Allison Steele
Warning: Graphic Incision Photos Below
March 12, 1995 I was blessed with my one and only baby sister. She was the second grandchild and niece, behind me, on both sides of our family so the love for her was abundant from the start! Kim was a sweet, sensitive, curly-q and we were always known as the "giggle sisters" growing up.
Little did anyone know until Kim was about 17 years old, that she had been developing a rare, slow growing brain tumor since she was just an embryo! She was feeling pressure in her head when laughing or straining in some ways so she went to get it checked out with a primary care doctor. The pressure sensation and hearing issues she was feeling were written off to be caused by dehydration or possibly high sugar levels. After none of the initial remedies subsided the pressure or other symptoms, Kim kept returning until she was finally sent for a MRI. Once the MRI showed something of concern, she was referred to see a neurosurgeon to discuss. A neurosurgeon close to home and a separate family-recommended neurosurgeon were both uncomfortable with working with Kim's case.
This tumor, known as an Epidermoid brain cyst, is usually benign and "develops when cells that are meant to become skin, hair, and nails (epithelial cells) are trapped among the cells that form the brain." Kim's mass was discovered to be wrapped around 9 out of 12 of her cranial nerves and her brain stem. It was in a rough spot and was rather large. It had been growing for 18 years! We were finally recommended to see Dr. Sen at NYU Langone in New York City who was willing to discuss a surgery option to remove Kim's tumor. Being over an hour from our home in New Jersey, the transportation and hotel stay expenses began. Whether it was bus, train, or a private car to a nearby hotel - each trip was expensive.
Kim finally underwent an almost 12 hour brain surgery with Dr. Sen and his surgical team in August 2014 at the age of 18. She was a trooper going in and a trooper coming out. We were told by Dr. Sen, after his very long day in surgery, that all of the tumor was removed except for some very small pieces that he was unable to get to at the time. The surgery was successful but there was temporary double vision and muffled hearing due to aggregating the nerves. Kim was told she would possibly need another surgery in another 20 years, if those pieces grew just at it had before.
After this successful surgery, Kim came into some complications which just prolonged her healing and recovery. A few weeks after, her Cerebrospinal Fluid (CSF) was leaking from her incision which had the hospital calling Kim to come back immediately to properly drain it with a spinal tap for 4-5 days. A month after the initial surgery, she was back in the operating room to clean out infection. After that, she was home with a PICC line for 8 weeks for antibiotics. A visiting nurse would come to change her bandages and help with her IVs every day. As a family we even learned how to help out ourselves.
Fast forward to 2020 (one hell of a year), where Kim is due to go for her annual MRI for Dr. Sen to monitor any growth. Well, of course this year brought the bad news that the left over pieces did show growth and it was significant enough to have a second surgery. The mass was sticking to Kim's 7th and 8th cranial nerve, which controls her face and hearing. This was a shock to us all. We thought Kim would be 40 years old if she ever needed to have another! But, the race was on to get it taken care of before Kim was kicked off our parent's health insurance and before I was to be married where Kim would be my Maid of Honor! Dr. Sen was confident he could remove the remaining tumor and be done with this once and for all.
On January 12, 2021 Kim underwent a third brain surgery, for 6 hours, under Dr. Sen and his surgical team. They successfully removed the rest of the remaining mass which breathed a sigh of relief to our entire family. Kim would not have to have this burden on her mind anymore (literally). She was sent home to begin her healing.
A couple of weeks after her third surgery, a large pocket of the CSF was forming right along her incision. It looked like a golf ball at one point. When the fluid did not dissipate on its own, Kim was back at NYU to try a head wrapping and new medication to stop the fluid from building up. She was wrapped so tightly for 4 or 5 days until she could remove it to see if this plan worked. Unfortunately, it did not and the next course of action was to surgically implant a programmable ventriculoarterial brain shunt to drain her CSF to an artery or vein leading to her heart.
Tomorrow, February 18th, Kim will be undergoing her 4th brain surgery at the age of 25. Our hopes and prayers are that this shunt will do its job and can eventually be removed. The dial that is "programmable" will allow her doctors to change the flow of draining over months time to see if the shunt is no longer needed. We are continuing our hopes and prayers along with so many family and friends that have sent their well wishes or are thinking of us all that tomorrow goes as smooth as possible. We hope Kim is coming to the end of this so she can get back to living her life!
I know this is long, and those of you who know me personally know I can get carried away with a keyboard. I decided I wanted to do this for my sister and for my family, who is dealt with unfortunate circumstances in what feels like more often than not in our lives. In the midst of all of this going on, our father James Steele was diagnosed with early-onset Alzheimer's around the same time we learned of Kim’s tumor. We are going on 7 years since his diagnosis at 54 years old. The stresses that our family faces can sometimes be overwhelming but with the support of our friends and family, we're all still trucking along and being strong for our Kimberly. We are a tight-knit crew here and I hope this long message of Kim's trying story is able to give back even a little bit to Kim and my family after this very financially and emotionally draining ordeal.
Kim's health insurance runs out in 3 weeks where she will be forced to purchase her own plan and pay out of pocket for its premium. Depending on her deductible, which will probably be high (I have to purchase my own plan as well), she will have to pay for when she goes to Manhattan for follow-ups or whatever other future health plans are set for her. She is out of work for the time being and receiving a very low short-term disability check every two weeks. Being a dog groomer, a majority of her pay is made from tips. Being out of work has her struggling to make ends meet while she is supposed to be healing.
Please consider making a donation to Kim and her recovery or simply share this page to others. For more information on these rare Epidermoid brain tumors, please see http://epidermoidbraintumorsociety.org.
Thank you all for reading, donating, sharing, and just thinking of Kim and her road to a full recovery. We love you Kimber <3
Peace & Love Always,
Allison Steele
Co-organizers (2)
Allison Steele
Organizer
Howell, NJ
Kimberly Steele
Beneficiary
Susan Steele
Co-organizer