- L
- J
Ok everyone, I need your help and I am terrible at asking for it so please bear with me...
We made the long trip to Cincinnati January 21, 2021 from CHOP and have been admitted here since. The medicine we came here for that was a miracle for Piper (and others like her) saved her MAS -which was really bad by the time we got here. It was thought we were going to need to continue to receive it even after she was discharged but then on February 15, 2021 they discovered cancer in her brain after she went unresponsive overnight and a bunch of scans led to a brain biopsy. Since then she has been undergoing chemotherapy for Primary CNS Lymphoma. Which I’m told was brought on not only by all the immune suppressing meds used to treat her SJIA but also the horrible disease itself.
For the first 3 cycles her SJIA-MAS remained controlled with a low dose med for it on top of all the chemo (2 of which are also used for SJIA) but when they started slowing down on the chemo due to the dramatic effects it had on the cancer, her SJIA-MAS flared again and the medicine for it had to be increased. Because of the cancer she can not get the medicine we had come here for that saved her from MAS the first time, and with her history there are few left to try. The current med since being increased seems to be doing ok but she still has not been able to get off steroids and there is some concern she may never be able to. All the years of steroids have caused Osteoporosis so now she has that to deal with as well. She also lost mobility on her left side (due to damage in her brain from the cancer) and has had to undergo intensive physical and occupational therapy daily but even with a few setbacks (fractures caused by the osteoporosis) she is rocking it and is now able to walk with a walker and has use of her left hand altho it is still very limited.
Originally I thought the best thing to do was to relocate here so at the suggestion of a friend, I started this GoFundMe… but, then I realized my support system is back home and having one when you have a child as medically complex is important, and since I am her full-time caregiver there is no way I could build another here. So instead, I have been working with the doctors here to open up lines of communication with doctors back home and come up with a plan so they can all work together to manage Piper’s complex medical needs.
I was torn about creating this fundraiser…I’m a very private person and I hate feeling like a bum asking for money but that's not what I'm doing or what this is about...it's about helping a sweet little girl get the treatment she needs! Yes, it was originally to help our family relocate from our current home in central PA to be close to Cincinnati Children's Hospital in Ohio, but plans have changed and now it’s to help cover the cost of travel expenses, since we still have to make the 9hr trip home after chemo is all done and then monthly 3hr trips to the next closest facility back home where she will continue treatment. Her insurance company had originally told me this stay would not be covered (since it is out of state) but I fought and jumped thru hoops to make that happen, however there are still things they can’t or won’t cover so there are still some out of pocket expenses even while we are inpatient.
Please find it in your hearts to donate (even $5 if you can spare it would help) and if you can't donate then please share and maybe someone else will see it that can. Prayers are equally appreciated! Thank you for taking the time to read this! God Bless!