Carelines Fund


Carelines Fund

Welcome to Emily’s Carelines page! Thank you for coming to support Emily in her journey of recovery. Here you can:

Emily’s MOST RECENT UPDATE

Jan 4th, 2022
Jan 7, 2022
Transplant update: After 27 days. I left the hospital... not feeling better yet, but improved from a few weeks ago.... Dr's think the transplant went fine but that I now have a new disorder called Evan's Syndrome.... it's not really the best disease... but I guess time will tell how bad it affects me. . About 4-5% of people get Evans syndrome post transplant. . It's discouraging because the transplant was supposed to be a "cure" for aplastic anemia and PNH. Which it seems like it did get rid of them. But now with Evans syndrome, the symptoms are basically the same as aplastic ... READ MORE

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Jan 4th, 2022
Jan 7, 2022
Transplant update: After 27 days. I left the hospital... not feeling better yet, but improved from a few weeks ago.... Dr's think the transplant went fine but that I now have a new disorder called Evan's Syndrome.... it's not really the best disease... but I guess time will tell how bad it affects me. . About 4-5% of people get Evans syndrome post transplant. . It's discouraging because the transplant was supposed to be a "cure" for aplastic anemia and PNH. Which it seems like it did get rid of them. But now with Evans syndrome, the symptoms are basically the same as aplastic anemia and PNH.... so almost full circle except there's no cure for Evans syndrome.... . With aplastic anemia and pnh my body wasn't making blood and it was forming blood clots. With Evans syndrome my body is destroying the blood that is made and it's forming blood clots.... . But they say when you get one autoimmune disorder, you tend to get a bunch. . The journey continues, I guess. I appreciate all of the positive vibes you can send my way. 

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Day +67
Dec 14, 2021
Things were going smoothly, but unexpectedly had some complications on Tuesday and went back into the hospital on Wednesday. Dr's aren't entirely sure what's wrong yet, but hopefully we'll know more in a couple weeks. Last week I could walk around relatively simply, but starting Tuesday I couldn't stand up or get out of bed without being dizzy and having significant trouble breathing. I have been bedbound for 6 days now... Hoping for answers & improvements soon! Today is Day +67 from transplant.

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Day +3
Oct 12, 2021
Transplant update: feeling not too bad, but remembering that it's a long road ahead. Taking things one day at a time. I was able to walk around the hospital floor and take a shower, which were nice.
I'm still high risk, my neutrophils and other immune system cells reached 0.00 yesterday, so my immune system is all from antibiotics and antifungals.
But it's nice to have some time feeling not too bad.
Only 3 more doses of chemotherapy and then I be done with that!

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My Re-Birthday
Oct 8, 2021
Transplant update: finished the first major rounds of chemotherapy and biotherapy. Sometimes I feel OK and sometimes I'm really sick. Diarrhea, fever, nausea, etc.
The goal of the therapy is to get rid of my immune system so the new one can come in. Due to not having not much of an immune system, I have pneumonia and thrush on my tongue. Those are mostly to be expected though.
Ready to get this over with!
Getting the donor transplant cells today.
Today counts as my Re-birth Day

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Thank you everyone
Oct 6, 2021
Seeing so many people donate truly means a lot.  For the people who donated that I haven't ever met before, it reminds me of the kindness in the world. And for the people that donated from the different paths in my life, it reminds me that I'm not alone, and I mattered enough for you to reach out. From being in quarantine for so long, it's a nice reminder.  I'm currently  in the hospital now getting treatments, but seeing all of the kindness and generosity, it gave me a better feeling going into all of this.  Words cannot explain how thankful I am for you. 

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Day 6 in hospital
Oct 6, 2021
Transplant update: the last few days have been pretty rough, fever, chills, irregular heart functions, nausea, fatigue, etc etc. But finally feeling a bit better at the moment.
The packing in my nose from the nosebleed is finally out (it was painful and annoying) and now instead I have an oxygen tube, so glad for that switch off. The oxygen makes me feel better.
Hoping to stay feeling well, but I fully understand there's more to go. 3 of 4 chemo sets done
2 of 4 biotherapy done
Up next, finish the chemo and biotherapy then radiation then donor transplant cells then recovery.

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Emily’s STORY

Hi, 

Thanks for coming to my fundraiser page! 

Here's a bit about my journey:

-I grew up in Central PA in a middle class family seemingly healthy. 

-I attended Penn State University to become an Engineer. Throughout university I worked multiple jobs & proudly paid my way through and became debt free. I graduated in 2018.

-In 2019 I very suddenly became sick. Doctors were confused for months, and I stopped working for 9 months. My body wasn't making blood. After biotherapy and several other medications, I became stable. 

-I then was diagnosed with Papillary Thyroid Cancer (possibly due to the blood problems), but with surgery and radiation in June 2021, I was considered healthy again. 

-UNFORTUNATELY, in July 2021, my blood problems relapsed. 

-I am now facing a Bone Marrow Transplant to fully cure my blood problems (Severe Aplastic Anemia and PNH). I truly hope and believe that this will be the final step to being healthy again!

 

Bone Marrow Transplants are a pretty intense procedure, and although I'm mentally preparing, I am nervous. 

Starting October 2nd I will be in the hospital for about a month. Then I will have about 3 months of 24/7 caregivers. After that I may be able to live on my own again, but most patients do not work for 3-12 months. I'll be getting biotherapy, chemotherapy, radiation, along with several other drugs. About 70% of people with my disease make it through the transplant. Of the 70% of people, about 25% have lasting side effects, but since I'm young and have a 10/10 matched donor, we have high hopes that the transplant will go smoothly.  

 

That all being said, there are a lot of bills upcoming & I won't be working.

Medical related items:

-Health Insurance $477/month (currently paying for COBRA)

-AirBnb for my mom to move to Philly to be my caregiver for 4 months $13,000

-Parking TBD

-Food/Gas etc $120/month

-Medical Bills 2022 $3,500

 

Typical Bills Unrelated to Medical:

-Apartment Rent $950/month

-Utilities $130/month

-Car $175/Month

 

Assuming that I am out of work for 4 months, this is a total of over $22,000.

I will be very transparent and say that I am selling my Charlotte house to pay for these things & I may be making money from disability pay. Please only donate what you can easily spare. Anything that you contribute will help. 

These diseases have already taken away quite a bit of my time, I'm trying to also mitigate them from taking all of my life savings. Also, the nice part of using this website is that all donations are tax deductible (there is a 2.9% transaction fee, but if you write it off as a tax deduction, you should get 20%+ back), but again, please don't donate more than you can spare. 

 

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