On Monday, June 6, 2016 at 2.5 years old, I was diagnosed with a rare combination of a blood cancer called Acute Lymphoblastic Leukemia also known as ALL (I am in the high risk category) and G6PD which is an rare blood disorder that is incurable and complicates my chemotherapy treatment.
Although leukemia is treatable with 3.5 years of DAILY chemotherapy, I have experienced several severe complications. Vincristine toxicity; leaving me unable to walk for months, nerve damage throughout my body (neuropathy), PTSD, brain swelling (leukoencephalopathy) , hospital acquired infections and mouth sores are just a few of countless others. Today, I am up to 74 pills per month which continues to increase as my weight increases.
This fund is to get out of medical collection debt and to assist with the current cost of copays, medications and my holistic diet.
G6PD is lifelong. Due to G6PD I can't have foods with soy, beans (all beans but specifically fava), sulpha or artificial coloring especially blue and red dyes. It is genetic so my brother and sister also have it. We have a restricted diet so my parents have to provide fresh home cooked meals for me to ensure my safety, so no outside or fast food allowed.
We can't do this without you guys. Mom and dad are doing their best but moms income barely pays the bills and the debt just increases daily. Mom works full/over time to make sure we have a roof over our heads in food in the fridge. It sucks because mom really wishes she could stay at my bedside through these years and would love to stay home with me during these catastrophic times but her job not only provides a roof over our head and food to eat but health insurance for my treatment. It's so sad that mom has to choose going to work instead of staying with me and enjoying every moment of these unknown times.
Reluctantly, dad has given up his nursing career to ensure and solely focus on my well being as he has experience in the nursing field. When mom and dad worked I was not doing well. Family members and babysitters have tried to take care of me but it did not work out. Dad is the primary caretaker for me, my brother and sister as childcare is too expensive and risked my life especially with my medications. Dad is doing a great job and I know I would not have made it this far without his constant supervision and full dedication and observations of things that the hospital should have immediately picked up on such as MERSA and other hospital induced infections. Dad is under extreme stress not only as a caretaker of three kids under five but as he is always trying to stay ahead of my care. His mom was just diagnosed with a rare form of ovarian cancer that less than one percent of women get.
We really don't like to ask as we were very independent prior to this life changing diagnosis but we need the help financially to get through this very difficult time in our lives. If you want to donate gift cards for grocery stores, gas or children's store clothing that would be extremely helpful too! Please email [email redacted]
Mom is looking for a second job to cover expenses but they have just been piling up. Mom does not want to sacrifice my care for dad to get a job and focus on something other than me! I am sure you agree that nothing is more important during these critical times!
Also, we do not qualify for any government assistance due to mom making a few dollars over the required poverty level. Mom has reached out to many foundations and organizations but they were only able to help in the first year of diagnosis which was 2016. I have been taking chemo DAILY since 6.6.16 and my treatment is for 3.5 years so sadly we have maxed out mom and dads credit cards, savings and resources in an effort to prevent medical collection debt but still ended up in medical collection debt any way.
No parent should have to choose between going to work or spending every precious moment with their child diagnosed with cancer but my mom was forced to choose work.
Regardless of all that I have been through and still going through, I am a fighter! I do my best to smile, enjoy each day and stay positive!
I want to inspire kids and adults with cancer that you can do anything!
We greatly appreciate all of your prayers and support.
For more details on my story, please visit https://www.kingfightscancer.com/
A few people have inquired and in case you are wondering why the goal is so high, please see below.
Cancer is an expensive illness. The different kinds of costs faced by people with cancer include:
Direct medical costs. These include doctors' fees, hospital charges, and medication costs. If you have health insurance, your insurance will cover at least some, but probably not all, of these costs. For example, many people find that their insurance provides only limited coverage for prescription drugs. For people without insurance, the direct medical costs of cancer can be a serious obstacle to obtaining care.
Non-medical costs. These may include the cost of transportation to and from treatment, over-the-counter medications, child care, home care, and medical devices or supplies. These costs are usually not covered by health insurance and must be paid out of pocket.
Daily living expenses. These costs — for food, housing, utilities, and so on — may suddenly be more burdensome if the person with cancer or a caregiver needs to stop working.
- Turner Brown
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