We're all having a pretty difficult time dealing with all of this. There's a good chance we will need to travel even further given the rarity and that it has metastasized. I know a few of you have had cancer diagnoses before and can relate to what we are all going through. Because over the last month or more my organs have been pushed around and compressed I've had other issues to deal with as well, in addition to the spinal disability and increased spinal issues with the new tumors found this past month. We don't know the extent of the damage to my other organs, muscles, nerves, and pelvis because the pelvic tumor makes it difficult to see clearly in my scans. We have no idea what will happen down the road because there are so few people diagnosed with this type of cancer (only about 5-10/year at my treating hospital) and it doesn't react the same way as soft tissue sarcoma to traditional treatments. We are trying to be hopeful and have faith. Any donation whether PTO to Steve at work or financial will go straight to supporting our family and treatment expenses. Prayers and positive thoughts are a gesture with great meaning to me as well. It all helps.
The gofundme funds would be used towards the following:
-Genome Sequencing testing which costs up to 5k and is rarely covered by insurance, as well as immunoboosting therapy from the sequencing which can cost in the neighborhood of 7k/treatment every few weeks and also may not be covered.
-Out-of-state travel back and forth
-Any previous and ongoing treatments/surgeries/tests/etc including all out of pocket care and coinsurance or copayments, any experimental or out of network uncovered treatment
-PT which may be needed after the big surgery to remove the largest tumor which may require additional procedures to any affected organs and bones and will require large healthy margins around the tumor
-Daily hospital parking fees
-The days Steve will have to take as unpaid leave to care for me, as well as our youngest child since it will require a large amount of time away from work. We have already depleted much of his PTO over the last 5-6 weeks of tests and surgical procedures just getting to a diagnosis
-Family lodging required during travel as most low cost lodging for cancer patients only includes space for the patient and one adult caregiver
-Any additional costs we may have along the way including further travel for treatment only available outside of my primary treating hospital in Maryland.
-♥️Given the most recent news and prognosis, Traveling and spending time "Quality Time" with my family exploring new places together in-between treatments and getting the chance to see my toddler play in the sand and splash in the ocean water for the first time. I want them to see that there is still beauty in the world.
-♥️Anything left over will go towards end care planning, childcare for the little one, getting our affairs in order, the unpaid time off Steve will need to help our kids adjust, and to help relieve and offset some of the financial burden.
We desperately need your help and no amount is too small, nor too large. We are all just trying to adjust and cope right now with this new reality and preparing to hely the kids deat with the news as much as possible. We will try to update progress whenever possible on Facebook. My family and I will be forever grateful for any help you can give as it means more quality time together and less stress during this very difficult time. Please repost and forward this to as many people as possible. We are open to ALL funding avenues and sharing of this info. We all thank you from the bottom of our hearts and souls! Hugs and much Love to all of our family and friends!
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