Support Briley's Leukemia Journey
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In April of 2018, Briley was Diagnosed with High Risk B-cell Acute Lymphoblastic Leukemia known as ALL. After seeing her cardiologist due to what we thought we heart related symptoms. At birth Briley was diagnosed with Tetralogy of Fallot a four part heart malformation that was corrected by a double by pass open heart surgery. Later at 5 years old we found that her heart was three times the size of a normal 5 year old child and her heart would require and additional open heart repair to replace a valve, around the age of 10 or 11. With symptoms showing at 7, we assumed she would need her heart repair earlier then expected, but the symptoms were leukemia and not cardiac. We were devastated. As a family that has already watched their four month old go through and recover from open heart surgery, we were lost when given a leukemia diagnoses for the same child.
Briley was immediately rushed to Childrens Healthcare of Atlanta-Egleston 3.5 hours away from our home in Thomasville, Ga. She would remain in the hospital for 60 days due to chemo related reactions and a prolonged fever that lasted 40 days. During the induction phase of treatment Briley received weekly IV chemo along with daily oral chemo, weekly CT scans, a Arm and Lung biopsy, went eleven days with out eating, multiple lumbar puncture to place chemo in her spine and ensure that leukemia has not made its way into her central nervous system, a full body MRI all in a 2 month period. She was discharged to a out patient treatment plan of weekly chemotherapy and lumbar appointments for the 1st year and two addition years of monthly appointment. Throughout treatment Briley has participated in the Beads of Courage program, receiving a bead for different parts of treatment. They range from pokes, to port accesses, medication, days in the hospital, mouth care, and being Brave and doing hard medical events. To date Briley as received 1035 beads to give a idea of what she has had to handle all before the age of nine years old.
As her mother, I became her constant caregiver, leaving my employment and being unable to return to work currently 11 months in to her treatment. One of the hardest thing about going through cancer treatment is it is very very unpredictable, leaving a chance for many unexpected hospital stays. Lasting a undetermined time.
Becoming a single income family, requiring my husband to work as many hours and as much as possibly, missing much of Brileys and our family daily activity. With hopes his income will be enough to support us and this mentally and emotionally heavy and expensive load we were given.
While Briley was inpatient her father would work through the week and drive back and forth the 3.5 hours every weekend, Which was so very expensive and placing a lot of wear and tear on our vehicles, leaving them needing many repairs, that we are unable to complete. With treatment no where near the end our vehicles continue to become worse.
As Briley were discharged and returned to S. Ga we completed four three and half hour trips back and forth from our home to Atlanta for her weekly treatments. Leaving on Sunday returning on Wed. through the summer but as school approached our family came to the realization we would not be able to sustain a income required for the travel for treatment or getting our other child Brileys brother Cooper back and forth to school as we lived out of bus service area for him.
The weekend before school started we relocates to the north Atlanta area, but our house was not available so we switched between the Ronald McDonald House and a hotel as we were unable to stay at the RMH other then the days Briley had treatment. Staying four days a week for four weeks in a hotel, it took all of the income we had saved up to make it through to our house closed. We decided to buy a home at this time because cancer treatment being so expensive and the whole process is very unknown, we knew that if we did not buy now, there was a chance we never would be able to. It was a hard period placed on top of a already very stressful situation but it was needed to keep our very close family, close together during this time.
Currently Briley is receiving IV chemo at the hospital and nightly oral chemo at home. As everyone knows everything as a price tag, and prescription, even with insurance often leave us questioning if we will have to choose Brileys medication and less food from the grocery store. The price of life saving medication is out of hand, but yiu habe to buy them even if it leaves you penniless. And while we moved closer to Brileys treatment hospital we still live almost a hour away, making trips back and forth for treatment a bulk of our income for gas and food ( the steroids make Briley eat nonstop).
Briley still have around 21 month of treatment remaining if everything goes as planned. She will ring the bell for conclusion of cancer treatment on Sept 11, 2020.
Our family is thankful for any recourses we are blessed with and ensure any funds we receive will be used to keep things together for Briley and our family to stay above water so to speak.
Thank you very much
Please check out
Be Brave like Briley on facebook to follow Brileys journey
Briley was immediately rushed to Childrens Healthcare of Atlanta-Egleston 3.5 hours away from our home in Thomasville, Ga. She would remain in the hospital for 60 days due to chemo related reactions and a prolonged fever that lasted 40 days. During the induction phase of treatment Briley received weekly IV chemo along with daily oral chemo, weekly CT scans, a Arm and Lung biopsy, went eleven days with out eating, multiple lumbar puncture to place chemo in her spine and ensure that leukemia has not made its way into her central nervous system, a full body MRI all in a 2 month period. She was discharged to a out patient treatment plan of weekly chemotherapy and lumbar appointments for the 1st year and two addition years of monthly appointment. Throughout treatment Briley has participated in the Beads of Courage program, receiving a bead for different parts of treatment. They range from pokes, to port accesses, medication, days in the hospital, mouth care, and being Brave and doing hard medical events. To date Briley as received 1035 beads to give a idea of what she has had to handle all before the age of nine years old.
As her mother, I became her constant caregiver, leaving my employment and being unable to return to work currently 11 months in to her treatment. One of the hardest thing about going through cancer treatment is it is very very unpredictable, leaving a chance for many unexpected hospital stays. Lasting a undetermined time.
Becoming a single income family, requiring my husband to work as many hours and as much as possibly, missing much of Brileys and our family daily activity. With hopes his income will be enough to support us and this mentally and emotionally heavy and expensive load we were given.
While Briley was inpatient her father would work through the week and drive back and forth the 3.5 hours every weekend, Which was so very expensive and placing a lot of wear and tear on our vehicles, leaving them needing many repairs, that we are unable to complete. With treatment no where near the end our vehicles continue to become worse.
As Briley were discharged and returned to S. Ga we completed four three and half hour trips back and forth from our home to Atlanta for her weekly treatments. Leaving on Sunday returning on Wed. through the summer but as school approached our family came to the realization we would not be able to sustain a income required for the travel for treatment or getting our other child Brileys brother Cooper back and forth to school as we lived out of bus service area for him.
The weekend before school started we relocates to the north Atlanta area, but our house was not available so we switched between the Ronald McDonald House and a hotel as we were unable to stay at the RMH other then the days Briley had treatment. Staying four days a week for four weeks in a hotel, it took all of the income we had saved up to make it through to our house closed. We decided to buy a home at this time because cancer treatment being so expensive and the whole process is very unknown, we knew that if we did not buy now, there was a chance we never would be able to. It was a hard period placed on top of a already very stressful situation but it was needed to keep our very close family, close together during this time.
Currently Briley is receiving IV chemo at the hospital and nightly oral chemo at home. As everyone knows everything as a price tag, and prescription, even with insurance often leave us questioning if we will have to choose Brileys medication and less food from the grocery store. The price of life saving medication is out of hand, but yiu habe to buy them even if it leaves you penniless. And while we moved closer to Brileys treatment hospital we still live almost a hour away, making trips back and forth for treatment a bulk of our income for gas and food ( the steroids make Briley eat nonstop).
Briley still have around 21 month of treatment remaining if everything goes as planned. She will ring the bell for conclusion of cancer treatment on Sept 11, 2020.
Our family is thankful for any recourses we are blessed with and ensure any funds we receive will be used to keep things together for Briley and our family to stay above water so to speak.
Thank you very much
Please check out
Be Brave like Briley on facebook to follow Brileys journey
Organizer
Brigitte Fleming Lamon
Organizer
Dacula, GA