Helping Ellie Fight

This go fund me has been started by Cody and Cora, the sisters of Jamie; Ellie's mom. Here is Ellie's Room number (2109) and a link to send her an E-card if you would like. She loves getting mail!
//www.nemours.org/patientfamily/ecards.html 

When Ellie was less than 4 months old she had a heart transplant, and she has struggled ever since. There have been holidays spent in the hospital, way too many hospital stays to count, missed birthday parties and sleepovers with friends, and everything else that a normal child deserves to experience in life. Ellie is now home schooled due to missing too much school as it is too dangerous to be around that many kids in a public place at one time, and she has been too sick to return to school since early September of last year. 

UPDATE from Jamie: 12/23/19

Right after school started in August, Ellie showed extreme sickly symptoms...high fevers, lethargic, lack of appetite, etc. It took approximately 2 weeks to get a correct diagnosis, which ended being EBV (Epstein Barr Virus). Her initial level was 1.6M. She'd gone 9 years with a level of 0, so imagine our surprise and sudden need to do new research to find out what EBV even was. Immediately, Ellie's heart suppression meds were decreased to allow her body the opportunity to take over naturally and fight this new virus. Three months later....very little change! She's been in and out of the hospital consistently with infections, now gets homebound school, and her quality of life has decreased significantly. The scan was done to rule out PTLD or any tumors. What they did find was another infection, which is actively being treated. Unfortunately, everything that has been done has given us NO answers as to why her EBV levels are so elevated. She is now considered to have chronic EBV, which is dangerous and deadly. We are all coping the only way we know how, which is marching forward. 
We do however finally have a PLAN! Ellie will begin infusions of Rituximab. She will receive 4 infusions over 4 weeks. This medication is extremely strong and the side effects are great. Her entire immune system will be "toast", and this will contine for approximately 6 months. She will most likely contract every 
infection and virus she comes in contact with, so we will practice "bubble" living. 
It's not easy living life "on the edge" with your child. Sleeping next to her every night to make sure she's breathing. Fighting daily for her healthcare. Fighting daily to preserve her quality of life. 
So if you pray, please pray that my Ellie will SURVIVE this! She NEEDS this treatment to be successful. She DESERVES for this treatment to be successful."


UPDATE 1/13/20:

Rituximab day! 45 minutes into the infusion and the side effects are hitting Ellie hard. She was already premedicated and now the rate was lowered to the minimal. Originally a 5 hour infusion, but at a lowered rate, will take longer. Prayers that her body tolerates this medication as we help her through the evening, into the night.

UPDATE 1/14/20 10:30am

18.5 hours later, infusion is complete! Ellie can tolerate a super slow rate (30cc/hr), with little side effects. Echo/ekg scheduled and if all OK, going home today! To be repeated next week ‍♀️

UPDATE 1/14/20 6:15pm:

NO DISCHARGE TODAY! Echo performed right before potential discharge today and bam! Reduced heart function, lowered ejection fraction (ef) combined with a chronic high heart rate. DISAPPOINTING! An emergency catheterization and heart tissue biopsy within the next two days to measure any suspected heart rejection. This is a blow, as her heart function (despite ALL of her ongoing issues) has always been pretty great since transplant. The past four months have been exhausting to Ellie's body. Multiple medication changes, a virus her immune system cannot fight, infection after infection. Please pray that her body can fight once again and the doctors have the wisdom to treat her. Right now, Ellie looks pretty fantastic on the outside. She might lack stamina, but she makes up for that in character, still a 24/7 clown. She misses her school friends (she's not been in class since early September) but we are so very thankful for all of her cousins who give her plenty of attention and companionship. Thank you for your continued thoughts & prayers."

UPDATE 1/16/20:

Partial results are in....cell rejection! Antibody rejection results pending tomorrow. We got out of the room tonight to get our steps in, do a little "shopping" and enjoy some frozen yogurt. Tomorrow, Ellie's IV steroid treatment will start and contine through the weekend. Thank you for your continued thoughts and prayers

UPDATE 1/17/20:

Mixed news today...First... let's start with the good! Ellie has a happy heart today! ❤ Heart function looks stable and some other measurements also showed a bit of improvement! And then the bad , Ellie's antibody mediated rejection numbers are high Super sigh. This is basically a second layer of rejection, because her own antibodies are different that the antibodies of the donor heart. The current plan is to continue IV steroids through the weekend, do another dose of Rituximab on Monday and attempt to restart her big gun suppression meds. One last "fun fact"... I've said forever (like for 30 years) that atleast ONE of my kids would go to the Olympics! Well, little did I know that kid would be Ellie, who's been invited to the Transplant "Olympic" Games in July 2020. So BOOM , literally a dream come true


This has all taken a toll on Ellie of course,  but  she is a champ and continues to be a joy in all of our lives despite everything she is going through. This has also been extremely hard for Jamie being a mom of 4 kids, and she has been fortunate to have flexibility and be able to work at the hospital and from home.
Unfortunately, due to company downsizing, she was let go just two weeks before Christmas of last year. Jamie is struggling to maintain a household while being there for Ellie in the hospital at the same time. The funds raised will go towards any medical bills accrued which are not covered by insurance, anything Ellie needs to make her comfortable while she is in the hospital, and the rest will go towards gas for 3 hour round trip drive to the hospital that Jamie makes and whatever else bills that need to be paid while she is in between jobs.