KISSES FOR KHLOE !
Donation protected
We are raising money to help a family get through the financial burden of major medical expense and the time commitment to one little girl that doesn't allow her mom to work.
below is information from Khloe's mom that gives a run down of this young ladys journey through this world to date.
there is an immediate need for money for transportation and home bills, then long term costs associated with travel to and from the hospital in Boston.
Khloe is a 7 year old spunky, sassy fun-loving little girl. After years of worrisome symptoms overlooked by her pediatrician, since the age of 3, Khloe's symptoms began to worsen month by month which ultimately led to day by day to almost losing her at age 5. Amy, Khloe's Mommy knew there was something causing the significant symptoms, therefore was adamant in finding the cause. Finally, a disorder called Chiari Malformation was considered and to be determined through an MRI. Finally the day of the MRI came and immediately changed our lives for forever. Khloe was transferred to Albany Medical Center’s OR to undergo an External Ventricular Drainage placement, a tube inserted into the upper part of her brain to release fluid and pressure surrounding her brain. The causes were then evident, a massive tumor located within her brainstem and filling her Cerebellum, as equivalent to a softball, seven smaller tumors surrounding that area of her brain as well as tumors which later revealed metastatic cancer throughout her spine as well. She underwent a 14.5 hour brain surgery where they were able to remove 90% of the largest tumor. Khloe was diagnosed with malignant Pilocytic Astrocytoma. Since then she has faced a long journey with some bumps in the road, but was responding well to treatments. This February Khloe became a proud big Sister to Braelynn which has brought nothing but happiness to Khloe. Khloe is the most beautiful little mother hen and we truly believe it's been the profound medicinal cure for her worrisome blues. Those two little ladies already share such a strong bond, just so beautiful to witness. Well April 4th of this year we were ready to celebrate the completion of treatment due to timing issues, her MRI scan revealed the tumor has grown along with a few new tumors in her brain, brainstem and spine. Khloe's only option at this time is to receive a clinical trial in Boston, MA as all other options have been exhausted at Albany Children's Medical Center.
While awaiting the start of the trial Khloe had another scan on June 6, 2018 which revealed a significant amount of growth just within 2 months. At this time a completely new tumor in her brain has been found and the original tumor has grown as well. Khloe started the MEK162 trial this past summer and all of the tumor's have responded well! There was a cyst like nodule found on her right kidney, but at this time we will monitor it closely. Children like Khloe often are diagnosed with kidney like cyst, so this not not uncommon.
In the beginning biweekly weekly trips to Boston were made and various specialty appointments throughout the months as well. Khloe continues to struggle with balance, coordination, pain; leg, neck and back pain due to Neuropathy, nerve damage due to chemotherapy and the tumor placements within her brain and spine and of course frequent headaches. Recently Khloe lost the ability to hold her head up and her legs and back would often give out on her, this was due to the trial and once off of it she regained control. Khloe's memory is quickly deteriorating, she often struggles to count to 10 and has forgotten the complete alphabet. Khloe is able to go to school most days and has an aide to assist her throughout the school days.
In the beginning of December, Khloe has an MRI, to review progress at 6 months while on the clinical trial, everyone was shocked. We learned the trial has damaged the left ventricle in her heart and was only functioning at 48%. There has also been new tumor growth in her brain and spine. This immediately disqualified Khloe from the clinical trial. Since then her heart naturally repaired itself and she is on a washout, to clear her little body of all chemotherapy. Within the next week or two doctors will discuss new treatment options available for Khloe. Unfortunately Khloe’s PORT has stopped functioning, so if a intravenous treatment is chosen, she will go in for another surgery to switch out the old for a new.
Khloe deserves more, she deserves it all. If you ever get the opportunity to be enlightened with her presence you will understand, her smile is one that you'll always remember and her witty character is beautifully unique. She is such a lover, for everything. Khloe loves life and living to its full. She loves glitz and glamour but is no stranger to dirt, she's also a flower child. She has a passion for fashion, nature, all animals which also includes anything living such as an ant or cricket.
below is information from Khloe's mom that gives a run down of this young ladys journey through this world to date.
there is an immediate need for money for transportation and home bills, then long term costs associated with travel to and from the hospital in Boston.
Khloe is a 7 year old spunky, sassy fun-loving little girl. After years of worrisome symptoms overlooked by her pediatrician, since the age of 3, Khloe's symptoms began to worsen month by month which ultimately led to day by day to almost losing her at age 5. Amy, Khloe's Mommy knew there was something causing the significant symptoms, therefore was adamant in finding the cause. Finally, a disorder called Chiari Malformation was considered and to be determined through an MRI. Finally the day of the MRI came and immediately changed our lives for forever. Khloe was transferred to Albany Medical Center’s OR to undergo an External Ventricular Drainage placement, a tube inserted into the upper part of her brain to release fluid and pressure surrounding her brain. The causes were then evident, a massive tumor located within her brainstem and filling her Cerebellum, as equivalent to a softball, seven smaller tumors surrounding that area of her brain as well as tumors which later revealed metastatic cancer throughout her spine as well. She underwent a 14.5 hour brain surgery where they were able to remove 90% of the largest tumor. Khloe was diagnosed with malignant Pilocytic Astrocytoma. Since then she has faced a long journey with some bumps in the road, but was responding well to treatments. This February Khloe became a proud big Sister to Braelynn which has brought nothing but happiness to Khloe. Khloe is the most beautiful little mother hen and we truly believe it's been the profound medicinal cure for her worrisome blues. Those two little ladies already share such a strong bond, just so beautiful to witness. Well April 4th of this year we were ready to celebrate the completion of treatment due to timing issues, her MRI scan revealed the tumor has grown along with a few new tumors in her brain, brainstem and spine. Khloe's only option at this time is to receive a clinical trial in Boston, MA as all other options have been exhausted at Albany Children's Medical Center.
While awaiting the start of the trial Khloe had another scan on June 6, 2018 which revealed a significant amount of growth just within 2 months. At this time a completely new tumor in her brain has been found and the original tumor has grown as well. Khloe started the MEK162 trial this past summer and all of the tumor's have responded well! There was a cyst like nodule found on her right kidney, but at this time we will monitor it closely. Children like Khloe often are diagnosed with kidney like cyst, so this not not uncommon.
In the beginning biweekly weekly trips to Boston were made and various specialty appointments throughout the months as well. Khloe continues to struggle with balance, coordination, pain; leg, neck and back pain due to Neuropathy, nerve damage due to chemotherapy and the tumor placements within her brain and spine and of course frequent headaches. Recently Khloe lost the ability to hold her head up and her legs and back would often give out on her, this was due to the trial and once off of it she regained control. Khloe's memory is quickly deteriorating, she often struggles to count to 10 and has forgotten the complete alphabet. Khloe is able to go to school most days and has an aide to assist her throughout the school days.
In the beginning of December, Khloe has an MRI, to review progress at 6 months while on the clinical trial, everyone was shocked. We learned the trial has damaged the left ventricle in her heart and was only functioning at 48%. There has also been new tumor growth in her brain and spine. This immediately disqualified Khloe from the clinical trial. Since then her heart naturally repaired itself and she is on a washout, to clear her little body of all chemotherapy. Within the next week or two doctors will discuss new treatment options available for Khloe. Unfortunately Khloe’s PORT has stopped functioning, so if a intravenous treatment is chosen, she will go in for another surgery to switch out the old for a new.
Khloe deserves more, she deserves it all. If you ever get the opportunity to be enlightened with her presence you will understand, her smile is one that you'll always remember and her witty character is beautifully unique. She is such a lover, for everything. Khloe loves life and living to its full. She loves glitz and glamour but is no stranger to dirt, she's also a flower child. She has a passion for fashion, nature, all animals which also includes anything living such as an ant or cricket.
Organizer
Martin Kunath
Organizer
Lake George, NY
